Coping with a progressive and Chronic illness……

Its odd but I find I can cope with my MS, its other people who seem to struggle with it.  My idea really is to just live a normal a life as possible. I don’t want visitors to come and see me and pity me, or keep asking me “how do you feel”? or well you “Look good”!

It depresses the hell out of me. Also if I do say well i am really tired today the stock answer back is “oh yes” I get fatigue too, it comes with age, or my memory is crap you guessed it the same answer back yeh it comes with age, blah blah blah.

Do you eat well?  Try supplements, meditation, go gluten free and dairy free, watch your diet, oh and don’t forget EXERCISE.  we are BOMBARDED with ideas on how to make our journey with this illness easier or even grant us a miracle and cure us, just by buying a book that tells us so. I have bought the books and they all contradict each other. One says eat lagumes the other one says dont eat lagumes. Its never ending.

You should try this diet or that diet, everyone is an expert on how to cope with MS. What people seem to misunderstand is a simple concept.  There are FOUR types of MS.

Clinically Isolated Syndrome (CIS)

Relapsing-remitting MS (RRMS)

Secondary progressive MS (SPMS)

Primary progressive MS (PPMS)

Other, unusual types of MS have been described; these include Devic’s diseaseBalo concentric sclerosisSchilder’s diffuse sclerosis, and Marburg multiple sclerosis. There is debate on whether they are MS variants or different diseases.[63] Multiple sclerosis behaves differently in children, taking more time to reach the progressive stage.[5] Nevertheless, they still reach it at a lower average age than adults usually do

Each MS is dealt with differently. RRMS you can start disease modifying drugs, and have a chance of much less impact on your life if the drugs work for you and you can go into remission for weeks, months and years with very little symptoms.

With PPMS you get this at an older age as a rule. As we know as we get older things wear out  so sometimes you never know whether it is your MS or just your old joints giving you gip or your eyesight or your bladder.

There are no DRUGS for PPMS. No books to read on how to cope with it.  Most famous actors with MS who go around showing how well they are coping with their MS have in actual fact got RRMS.

The books written which are famous for making some of us feel like crap are:

Terry Wahls Protocol (written for RRMS).

Over coming MS. (Written by George Jeinek another sufferer of RRMS)

The Swank diet.

“Ashton Embry’s Best Bet Diet

OMG really all these people have their own ideas on how to cope with MS.  Its so confusing its enough to put anyone in a relapse trying to make sense of it all. Believe me i have read some of them, well skipped through.

I actually try and eat very well and i don’t over eat either.

My way of coping is this.


I think part of a healing process no matter what it is, is ACCEPTANCE. I often liken to having a diagnosis of a disease like MS is we have to go through the grieving process. 

  2. ANGER

I honestly believe we have to accept our illness in order to help us deal with it and yes maybe in some way heal ourselves or help us cope with it better. If it means telling your auto immune to go and do one then so be it. You have accepted the fact that it is this which is controlling your life right now, and your not about to let it rule what you can do.

I suppose what I do is if i get a new symptom is i just accept it. I will say ah so that’s your game is it, today you are giving me an overacted bladder ok well i can deal with that. Not too much of a problem, and i will just pee when i need too and rest a bit more as I know sometimes i get it because i have over done it OR even worn warmer trousers I know silly but it is how i deal with it.

Or a new sensation will come along and i will accept it and say ok so thats your game today, you want to give me this that’s fine i can deal with that one, and i will just ignore it, not make a FUSS about it, and carry on doing things I enjoy like my garden hobby or taking my dog out.

I take only one 2mg diazepam at night for my MS. This is for muscle spasms perhaps which have occurred from poor posture.  It just helps me to settle down if i wake up.  During the day i take nothing. It doesn’t matter how much i am in pain, i accept that the pain is there and I move on.  What can I do about it? Its not REAL is it.  I say to myself I am not ILL I am NEUROLOGICALLY CHALLENGED.  I do listen to a lot of music which i find very calming.

top image is damaged. 

The myelin sheath is damaged which confuses the brain signals. These can be worsened through outside influences like heat for example.

When we are hot the spinal cord constricts, when we are cold it expands, so more signals can get through. So i avoid the heat as much as I can.

Inflammation can be stirred up by certain foods, so knowing which ones can do this its best to AVOID them. Which i do. For example gluten is a real trigger for me for more inflammation response like burning legs.  Like yesterday i just couldn’t resist some pasta and now my legs are really going for it, burning like mad but well it will settle down it always does.

STRESS is the worse thing for MS, so folks no stress please. I just cant deal with it, so everything in my life has to be pretty well organised.

Its LEARNING to live with what is going on and not to poke the bear. I know going out will make me fatigued, fatigue can be dangerous as I loose my balance more and more likely to fall so i do restrict how I go out.

I have accepted my MS its part of who i am. So i live with it i don’t fight against it. I have a decent enough life I suppose. I try my best to keep on my legs as i know to stop using them we loose them very quickly.  I am happy with what I have.

A lot of pain we have in MS in down to musculoskeletal pain, so its important to try as hard as we can to keep those muscles strong to support us.  I do have a scooter and I take my dog out everyday so she and I can have fresh air. It makes me good to feel the fresh air on my face. We use a wheelchair when i am shopping as to try and walk is just PUSHING THE BEAR to much. I have ACCEPTED that I cant do it so why push it.

Diet is defiantly a good way to start I think. I don’t think anyone with MS should smoke or drink to be honest as the smoking is bad enough but drinking alters the brain to some extent and its confused enough as it is and we are more prone to accidents or falls if our brain is so confused it doesn’t understand how to keep us safe.

So yes I do say “oh for gods sake go do one”! I cant be bothered with this rubbish (I use a stronger word here lol) right now. And after a while of switching it off in my mind i forget its there.

Like i said i take no drugs during the day. When the pain of wrong turn signals gets too bad I have a bit of therapy in the form of shopping lol. I have way too many things in my little flat lol. But it does work.

I also write a blog which helps me to concentrate on something else then what is going on with my body and I watch lots of things on amazon or netflix.

I know i have been told i have a progressive disease, i have to learn to live with it, no point in crying over it, there are worse things out there to cope with and people far worse then I am.  I think as humans we are challenged and its whether or not we ACCEPT that challenge or deny it that is the key.

All I need it my life is less stress, I have a loving family and friends, and when people do come and visit me, I just want to talk about NORMAL things, i dont want to be reminded constantly all the time, that i have a progressive disease, it depresses the hell out of me.

It all helps make this journey a lot easier to cope with if you just see me for who I am and if you really know me you will realise I am not about to let some disease invade my body and tell me what to do with my life, STRONGER MEN HAVE TRIED and not succeeded.

Something which is known just by capital letters is hardly ever going to be a challenge for me as i can change them. MS can stand for anything if you have imagination I call it  (Monster Sucker). It doesn’t have to stand for The End of your life, just the start of a different life with new challenges.


I just wanted to share with you how I cope with my progressive disease everyone is different and has their own ideas but its my personal journey and so far it works for me.smiley






Divine intervention?

Well its been a long time since i wrote.  I lost myself in grief and pain.  Slowly my inner strength the thing that defines me took over and helped me survive the death of my husband.

What to do next?  Really you get to a certain age and just assume you will spend the rest of your life with the person you love.  Sadly it wasn’t to be for me.  Once i lost my Mike it left me a widow, a pensioner widow, who had a good life to be honest. Now all I could see was me whiling the rest of it away in a recliner chair Waiting for God. waiting_for_god I sound sorry for myself. Not really i am a realist. Who would want to take on an old disabled pensioner like me?  Really.  I had resigned myself to spending the rest of my life just existing the best way I could. The time since my hubbies death just flew by in a blur. I missed him so much it was hard to deal with normal life.

My house became my prison. I hated it slowly over time. I could see Mike in the conservatory; hanging over my disability arm in the bathroom crying in agony, obviously scared, I think he had a sense his life was about to end.  I cant bear to go in there. I have to get a shower, i have to say guiltily that most of my life now is having a wash by the kitchen sink and hoping no one notices me.

After much soul searching i decided to sell our house. We bought it together it was ours, without him it was just a house. I needed to move and heal. I would bring Mike with me, not only in my heart but his ashes would come with me as i wanted us to be joined in death when the time came.

The house went on the market, i sold it straight away. I had spent a huge amount of money having it repaired and updated most of my savings from my mothers legacy had gone to make it a good saleable property. I wrote to mike in my book and asked him if it was ok, and next day i found a lovely bungalow ideal for me just a minute away from our home.  I took that as a sign he was happy for me.  3 months down the line, and packing as we were about to exchange contracts, the beginning of the chain fell through.

I was devastated, deflated, demoralised and distraught. The decision to move away from my home with Mike was hard enough but to be faced with this failure was even worse. What made it harder was the person who owned the bungalow wasn’t about to wait and for some reason took it back off the market, so my lovely bungalow was gone, like it never existed and i was left with a debt to pay a solicitor who had done all the work. What a bloody kick in the teeth. I was left with nothing, just a bill for £1,000. Think on folks if your buying a house make sure you have the money to proceed because if you don’t it causes nothing but heart ache for the people who are in a chain.

The stress of all this nearly put me in hospital. I felt ill and anxious every day, I lost my spirit. I felt deflated……sad-deflated-balloon-obama-supporterswhat was the point to life. MS has this weird habit of turning anything into a major drama. Where you would have normally just accepted something and got back on your horse, MS would make you feel emotion, irrational it is a really hard disease to understand. It took months to get back to any semblance of normalcy.

Finally, I plucked up the courage and tried again and put the house back on the market. In a few hours it sold again.  This time to a lovely couple who were very excited about the prospect of owning it.  I was assured that the chain was solid and things would go ahead.

I found myself a lovely park home where i could take my pets it was outside of my town but not too far away. Of course I was worried as it would be a wrench for me to move out of the area i had lived in for so very long since 1982.  However I felt reassured and glad they were going to have my home. It meant a lot to me that the right couple or person would take it on, as within its walls were a lot of good memories and yes some bad ones, but a lot of laughter and love too. Oh and of course a lot of loud discussions too.  We had regular family parties Mike and i could put on a mean party and barbecues that’s for sure. Also we had a few spirited spats too like any  normal loving couple do.  But overall the house was a happy house.


My beloved mum enjoying one of our many parties. Yes the house was a happy house.

The garden was huge and Mike had to make sure he filled it at the front with classic cars which he loved. His shed was full to the rafters with all the bits of mechanical stuff you never know you might need one day.

He could put his hand to most things when searching but i used to laugh with him and say hun you spend more time looking for things then doing.

But that was my Mike a hoarder. You cant change who they are. Warning to anybody out there who is thinking of marrying an engineer/mechanic/electrical your house will never be yours. Board up the cupboards or quickly claim them for yourself. Believe me every little bit of space will be used to hide the next little treasure that is unearthed. You have been warned……………..

Just a few of our cars you would see parked on our drive. Yes sometimes all at once. Mike was a superb driver and belonged to the Stroud Motor Club and won award after award each year for his hill climbing skills.  I used to go with him at the beginning before I got sick even had a go at it myself. It was amazing fun.  So yes my house was full of bits and memories.

It took months to sort out all the stuff left behind when he died. It was really upsetting to have to move stuff on that I knew he loved and had kept just in case someone might need it.  Yes whoever had our house would also take on all its memories so the right couple was important to me.

For two months things went smoothly then the day the phone call came again….the chain at the beginning had collapsed and i knew in my heart my lovely park home i had offered on would never ever be mine.

In the meantime my doctor had become concerned about my health and wanted me to move into sheltered accommodation. Now weirdly enough when Mikes mum had her stroke we had to move her into sheltered. I had found her a lovely flat. Her requisites were whatever i chose must have a good view be on the ground floor and she should see the trains go by.   Well as luck would have it, when i saw the council Housing Department a ground floor flat had just become available, so off I went to see it. Well it was perfect for her. A lovely flat with a view of the park and a railway track.

A lot of people never get on with their mother in laws but i loved Joan, she was spirited and said her mind and had a no nonsense attitude to life. Yes she could come over a bit fierce, but she loved her son with a passion.  To be honest we took her on holiday with us several times, and had no problems. In fact she made them for me, as I always felt comfortable with her.  The picture below. Joan and I on one of our holidays to Malta.


I got her settled into her flat, bought her furniture and she had a team of care workers to help her through the day.  She told me one day and her daughter that she wished she had moved into her flat years ago, rather then stay in her old creaky cottage, which was hard to keep warm, had awful bendy stairs and a huge garden which her husband George used to look after. Yes 3 years she loved it there, sadly we finally lost her and another chapter in my life was closed.

Well sorry i am flitting about again…. but background is important so you can understand where my thoughts are going. (Rather you then me)

The doctor wrote me a letter of support to our local council to get put on the waiting list for a sheltered flat.  I was given a silver banding, and could start to bid on properties which may be suitable.

Each week I would bid on something but no chance, there were people far worse off then I.  Then one Wednesday (the properties changed each Wednesday at 12pm), a sheltered flat came up in exactly the place my mother in law had been in. I was excited so bid on it and held my breath. All week I was number one on the list, then when the bid closed i was 9th in the list. I knew I wouldn’t get it. I was pleased though that someone who needed help would be moving into their new home soon. It was number 17 but at the front of the building. I was glad i failed as it would have been impractical with my dog (yes i could take my dog and cats).

I know people might think i am going insane but i talk to Mike all the time and write to him too when i feel particularly low. I did that day.

I felt alone and depressed. My house felt like a prison to me, the memories of him dying in the bathroom crying in pain was getting stronger and stronger, and I struggled to even go in there. I could see him all the time in my mind sat in the conservatory, frail and tired and depressed. I knew i was loosing him slowly as he had lost the man he used to be.

He was very independent, enjoyed doing things, you could see him struggling when he wanted to do anything on his car, or even try and mend a CB radio as his hands would shake.  His life was not who he was anymore, and to some people to loose who they were is the end of their journey. I felt it.

Now i could just feel sadness looking in his conservatory. It was his not mine.  I spoke to him spiritually and told him I needed to move it was my time now.  I had my memories good ones, but for now the sadness was overshadowing my life.

Sounds dramatic perhaps but like i have said before if you have MS your emotions are not your own anymore. The gene or the beast which has invaded your brain calls the shots.  If you feel you need to understand how I feel this is a good article on EMOTIONS in MS.

If your interested this explains  EMOTIONS IN MS

DEPRESSION  I would point out that when you have been with someone a long time, and they finally retire away from work there are signs you really need to look out for. A person who has been totally active since they were a teen to the age of 71 and suddenly face themselves with nothing to do, can be a slippery slope downwards. Just keep a gentle eye on them. Or if anyone you know exhibits any of these signs don’t leave it too late to take action.

I knew i was in trouble with Mike he was slowly getting more and more depressed would never get dressed and his life was just mooching around the house in his dressing gown, he was always cold and disinterested. I would be so worried and try and tell his family and they would be caring and come and see him, but he was like a chameleon could just change his mood. He would appear to them pretty normal.  As soon as they left he would be back. This is one picture i took a few years ago, no one has seen this before only I have seen it as I took it. This is the real man the one i was worried about.

Depressed I knew we were in danger.

Sorry i have flitted about again, but the back ground of my decision is important. The reason i wanted to move was the sadness of the house was starting to make me feel depressed. Like I said EMOTIONS OF MS are irrational. Living in a large 3 bedroom house with massive gardens was totally impractical for me. I had all my memories they would be coming with me. I can always narrate them on my blog if i need to remember the good times, and i have lots of photographs.

It was my time now to move and try to heal. Maybe i wasn’t ready yet to give up. Yes i had felt like it so many times, but if i gave up who would keep the memory of my hubby alive. No one. I still have my daughters and grandchildren, and my animals and friends and family. I wasn’t ready just yet to leave them all behind.

Sorry so going back i do speak to mike. The next bidding day came and another flat came up in the same place. I was so excited so i placed my bid and refused to look until the end of the bidding week.  I failed again number 8.  Then just before Christmas the phone rang it was the council they were offering me No 12 which was just 2 doors away from where I had gotten Joan a flat. It was smaller but perfect had the view of the park and the railway line, just like where I am now. I was so excited and scared.

I had to start paying rent, find a way to sell my house and move. But I knew it was right for me. I feel it is time now and felt a rush of happiness as I am sure in my heart and my mind that those two in heaven Joan and Mike had planned it all along.  The failed sales, the failed bid, then even though i thought i had lost my bid the phone call offering me my new home right where my mother in law lived.  I could see the park and enjoy the trains with her now and i know mike would be happy I was safe.  I honestly and truly believe this was divine intervention by two people I loved more then anything.

So i am moving I am going to start the next part of my journey with MS in a more safe environment so watch this space, I will be back as soon as I have settled in.

Thank you for following me this far. Its kind of exciting now…….and scary……..but i know i have people around me who love me to help me. I shall miss my house i have been here since 1991, but without my Mike its just a house.  I think i will feel just as close to him in my new flat as he visited his mum there everyday and was often outside dealing with her bird table.

Below is the penultimate message I wrote my Mike its exactly as i wrote it. I mention the place in my message. Now tell me its not DIVINE INTERVENTION. I can almost see the two of them, Mike and his Mum Joan colluding together, to make my sales fall flat and pushing me towards the flat perhaps because they needed me safe. I honestly feel they have been instrumental in some way of me getting this flat as believe me it is a miracle to be offered it.  They rarely come up in this spot because they are so popular.

Yes I really believe those two had something to do with it and it makes me feel kind of safe knowing that perhaps they are still around keeping an eye on me. I actually believe someone is there after an experience when my father passed, so I will never close my mind to the possibility that people we have loved in our life are still there in their death guiding us, we just have to believe and keep our minds open to the possibility.




I am sorry i haven’t written for a time. Writing my journey has been cathartic but also quite traumatic and did take a toll on me as it brought back memories some how i had managed to keep hidden. Stirred up stuff too and reminded me constantly that my beloved husband was gone. I was actually struggling more with anxiety and not coping with the grief as well as I should have.

So being a positive type of gal, I made a huge effort with myself and exciting new things are going on right now. I don’t want to say anything at the moment in fear of  jeopardising myself.

Hopefully soon my journey with MS will start its new phase  and once I have more positive news blogs will restart again so you can join me once more.

Will be back soon and thank you all who have taken the time to join me and thank you to all my friends and family who are supporting me now I love you all.

Those of you reading this with MS its hot now even in the UK, so stay cool, and hydrated and keep out of that sun. 

In the meantime if you haven’t read my little fiction stories grab a cuppa and have a read.

Let’s take a break……coffee anyone I will tell you a little story. Listen with Zenda.

Miracle Of The Cold Christmas Full Moon?





Was it the Miracle of the cold Moon? A little story to cheer us up.

It was 1977, December 24th cold and miserable. Sister Victoria Beatrice was feeling depressed. Nothing seemed to have gone right for the Nuns in her order this year. They had a small convent house located in small town in Boston called Swineshead but belonged to a bigger order of Nuns The Order of Saint Agnes who were based down in Cornwall.

Their mission was to help the poor but things had simply gone from bad to worse over the year they had been there. Sister Victoria Beatrice was starting to loose her faith in God.

They were hungry and cold. Her responsibilities at the order were to keep the garden stocked with vegetables and feed their chickens.  Nothing ever seemed to grow properly and the chickens seem to be constantly on strike. It was going to be a lean Christmas dinner this year.

She tossed and turned in her meagre and creaky bed. Finally; staying awake so long she realised it was Christmas.  She couldn’t sleep worrying about what the sisters would eat that day, as there really was only so much gruel a person could stomach.

She felt she had failed them it was her responsibility to make sure there was fresh vegetables and eggs in the larder, and all there was at the moment was a few potatoes, Brassica, and some swede and carrots not even any meat nothing.  Firstly because the bulk of their food went to feed poor children, and secondly sadly the rabbit traps had yielded nothing lately.

It looked like they would have to sacrifice one of the hens perhaps one of the older ones who was free loading and not laying, still the thought was unsettling, as all the hens touched her heart even if they could be hard work at times and her Sister Superior had no idea she had named all the hens.

Why was God punishing them?  They worked hard and helped as many people as they could but it left the Sisters with very little themselves.

The full moon was keeping her awake as it shone through her old mullion windows with leaded lights.  It was casting  weird dancing shadows around the room. Enough was enough, she decided it was no good just laying there, a walk around the garden and wall of the grounds might make her feel a bit more positive and she could check the traps perhaps this time they would be lucky. She quickly got dressed into her habit, and put her winter cloak on, as it was really cold and frosty out.

full-moon-names.jpg.662x0_q70_crop-scalePondering and lost in thought suddenly she thought she saw something glistening ahead of her in the moonlight, it was quite large or so it seemed an odd shape maybe more then one, cautiously and with trepidation she edged her way towards this sparkly object holding onto the wall as she did so.  There was definitely something there shining in the moonlight rays.

It was Christmas Eve a Saturday.  Graham was glad his shift was over finally and he could leave to get home to his family. He was a maintenance engineer for a large poultry factory in Norfolk, and his job was to keep the lines moving and well Christmas was one of the busiest times of the year for him.

He had expected to be away for at least a week, until the production line was shut down to give the maintenance engineers chance to give the plant an overhaul and clean before the holidays were over and the new batch of birds arrived.

To say he hated his job would be an understatement but it paid the bills. It was hard for him to see the birds trussed up moving along a conveyor belt to their death and the sight of the ducks being herded to their doom just following so innocently well put him off eating meat for life. He shook himself no point in getting maudlin he just wanted to get out of there. It was lunch time and he still had a four hour journey in front of him.

His home was by the sea a town called Seaham. It was nearly a 4 hour drive so he wanted to get going. He had chucked his bag into the back of his van, and was sitting in the drivers seat lighting his cigarette before he moved off, when there was a tap at the window.  It was Brian the foreman he indicated for him to lower his window.  Here you go mate a nice bottle of whiskey to enjoy Christmas with.

Whilst he was talking subconsciously graham could hear the back door of the van open and something sounded like it had been chucked in there, and then the bang and click of the door as it was shut. “Thanks Brian, that’s really kind of you mate, I was just doing my job”. “Yeh well we know but you always go the extra mile and keep us going”. He nudged me with his elbow and winked I have got Stan to put something for you in the back of your van, its a surprise. “Ok I said fine, I better get off as the wife is expecting me at tea time as family are coming over for Christmas Eve see you in the New Year”.

“Happy Christmas” he shouted loudly to all those who could hear him and with a quick wave he was off.

Radio on, he switched his mind off which was the only way he could cope with the long journey home he practically put himself on auto pilot.  The heating went on and he just drove towards home thinking about the days ahead with his family.  Robert his oldest wanted a bike, and Nancy their precocious 2 year old just wanted anything she was very spoilt sadly.  His wife Becky was a great mother and a good wife, he was really looking forward to seeing her and the kids and settled down comfortably for the long arduous journey ahead of him.

1121835_630x354His mind just drifted as the van ate up the miles and then suddenly a smell permeated his brain. It was becoming unbearable and it shook him out of his daze.  The heater was on still and he noticed a weird light in the sky apparently there was a rare full cold moon on Christmas night. A fleeting thought made him chuckle perhaps they would see father Christmas against the moon better not say any of that to Robert otherwise he would never go to bed.

Dragging himself to the present, he thought to himself crikey it cant be my socks, I know I wore them for a few days, but not even my feet are that stinky.  It was 2 hours into his journey and he just had to find somewhere to stop, so he got himself off the motorway and found a sign for Swineshead and the moon was already in the sky like a beacon guiding him there even though it was only about 4pm.   There was a Parking sign ahead so he headed for that. It was a layby and on one side by the grass verge was a brick wall.  He stopped, got his jacket on, and went around the back of the van.

He opened it to the worse smell ever the stench of rotten flesh or blood hit him full on. There on the floor of the van incredibly was a naked turkey, goose, and duck, all leaking out their bodily fluids onto his lovely clean van floor.  They had not been dressed but obviously just came off the last of the line before the workers dealt with them ready to be packed.

Ugh, he had a strong stomach but even that was making him feel queasy.  What on earth was he going to do?  He still had about 2 hours left on his journey.  Quickly gathering his thoughts he looked at the wall by the side of the layby it wasn’t so high he couldn’t toss the birds over there.  He knew it wasn’t the right thing to do, but hopefully there would be foxes about who would feast well that Christmas.

The road was very quiet as it was Christmas eve at 4pm most people were home.  Quickly holding his breath and checking the road for traffic, seeing nothing; one by one the birds were unceremoniously chucked over the wall.

Quickly and feeling a tad guilty he reached for the large roll of blue paper towel one of the essentials of being an engineer you never knew when you might need it and boy did he right now from the back of the van.

He wiped his hands and as much of the fluids off the floor of the van. The by now smelly wet blue paper towel was chucked into the bin at the side of the layby thank goodness for that.

He quickly shut the van door, went back to the front of the van took his jacket off and got back into the drivers seat. Boy he needed a cigarette after all that and really could have done with a drink. A stiff one.  He looked at the bottle of whiskey Brian had given him, but with a strength he didn’t know he had, he resisted the temptation to take a swig out of the bottle.  Drawing the smoke into his lungs, he slowly started to calm down.

You wait until he saw Brian again, he was so going to get an ear bashing.  As he sat there he pondered on what would happen to the birds, he hoped they would be found by a fox or badger, he didn’t really want to waste but needs must unfortunately, if only he really knew what happened to them!  He turned his van on and continued on with his journey home.

Sister Victoria Beatrice, with her heart in her mouth and holding her breath with anxiety, got to the mound on the floor, and instantly recognised 3 large birds, there on the ground glistening in the moonlight was clearly a very large turkey, a goose and a duck still with their heads on but naked with no feathers. She drew in a sharp deep shocked breath how on earth had they got there they were not mangled so not a secret hoard of a fox or badger how very odd.

She was stood there bathed in the light of the full cold moon looking upwards then back to the ground. Yes they were there, real. It was a MIRACLE a miracle she believed God had heard her prayers and sent them to her to feed her Sisters and the poor in her town, they would all feast well for the next few weeks with this bounty regardless of where they came from, they were a manna from heaven how they got there was not important as she knew in her heart that they had been left there by a higher being.

As she was close to the garden allotment she grabbed the wheelbarrow, and quickly placed her precious cargo onto the barrows tray and turning quickly full of excitement and joy she rushed back to the convent house, to wake up the Sisters and tell them all about their Miracle, the miracle of the cold moon……never to be forgotten for  many a year.   God hadn’t forsaken them one just had to pray harder and believe and good things can come right, as was proven that rare night of the 25th December 1977 yes a rare night in deed.

Names, characters, businesses, places, events, locales, and incidents are either the products of the author’s imagination or used in a fictitious manner. Any resemblance to actual persons, living or dead, or actual events is purely coincidental.


Note: This is a work of fiction but perhaps tinged with a little bit of truth but the writer is claiming the 5th amendment. I hope you have enjoyed it.

Copyright Zenda Trim.

Activities of Daily Living – Bathing – with a Chronic Illness and MS.


Well bathing yes those were the days of wiling away an hour in a nice warm bath after a hard days work. Just bliss.  How can something deemed essential and normal for human beings be such a chore for some of the people living with Multiple Sclerosis?

A little known fact about diagnostic testing for MS in the 19th century was believe it or  not the humble BATH.4359443_z

This involved lying in a bath of warm water. If this caused or worsened neurological symptoms, it was taken as evidence that the person had multiple sclerosis.

If only I had known that particular gem way back in 2000 I might have had more of an inkling on what was going on with my body.

I can remember saying to my husband, “can you be allergic to hot water”?  He didn’t think one could be but still I felt that I was. Every time I had my bath when getting out my legs would be burning and itching and overall I felt wiped out.  Scratching my head not a clue as to why even to the point of using less hot water, and sadly no more bath salts. This did not cure this weird phenomenon.

I pushed through and continued to wile away my exhausting days in a lovely warm bath even though I knew the consequences.


Then came the day suddenly well I couldn’t get out of the bath. It was a weekend Sunday morning I loved to have my soak on a Sunday makes you feel clean in and out.  Lying there just thinking about all the things one had to do the week coming up. The time came to get out of the bath, but I simply could not.  I was literally stuck hit by an overwhelming fatigue so bad I literally could not move my body.

To say I was scared was an understatement. No matter how I tried to vacate that bath I simply could not.  I called Mike who luckily for me was only in his CB radio room playing on his radio.  He came rushing to me as obviously he could hear the panic in my voice.

I was almost crying at this time, trying not to panic. “I can’t get out of the bath” I sobbed. He looked at me credulously and immediately grabbed hold of me trying in vain to pull me up, of course I was wet and slippy and he wasn’t the strongest of people and he lost the grip and went flying backwards. toe stuck in tap

Thankfully he didn’t hurt himself, but it sadly didn’t help me, I was still stuck there.

I literally had visions of burly hunky looking firemen coming to extricate me from the bath hum nice abs floating in my panicked mind but that vanished as normally they would only attend for a stuck toe in the tap and i wasn’t about to do that.

In blind panic I pulled the plug out at least if got rid of the water I thought it would help perhaps.  The water swirling down the drain until it was all gone. I lay there naked, tired frightened and exhausted.

As my body started to cool down I felt better, and said to Mike let’s try again, he dried me off a bit and then supporting me with his hands under my armpits and me kind of lifting myself up we managed to get me onto the rim of the bath. I tell you it would have made a fabulous video. Two people grunting and groaning trying to extricate me from a bath.

stranded fishFinally, with a huge effort I got to the bedroom and just flopped on the bed the fatigue so overwhelming all I could do was just lay there gasping like a stranded fish. It took about 30 minutes more or less to feel better, and I could continue getting dressed albeit a lot slower. I realised then that some how my illness whatever it was some how was impacting on me taking a bath, how odd. That was it for me, no more baths.  I wasn’t about to go through that again.

We had an electric shower and my next time for bathing was under that.

Now the weird stuff started.  I would have patches on my skin which I couldn’t feel the jets of the shower head. What was that all about.  I even had to have a cooler shower as again it would make me a bit tired. dirty

I think it would be easier for me if I just skipped bathing altogether but not sure my work mates would have appreciated that.  Mind you I would have had more energy.


This phenomenon has actually got a name.   Uhtoff’s Phenomenon 

Its the worsening of neurological symptoms in multiple sclerosis (MS) and other neurological, demyelinating conditions when the body gets overheated from hot weather, exercise, fever, or saunas and hot tubs and baths.

Well that made a whole lot of sense to a lot of things happening to me. Hot baths out, sitting in garden in the summer out, being in too warm a room out the list was being added too all the time.

SO if anyone with MS is reading this and wasn’t aware of the connection now you do. Those of you without MS if your friend with MS is a bit ripe its perhaps because they don’t want to waste all day recovering from a bath or shower.

To cope with this activity in daily living with MS you can adapt your bathroom. If you struggle to get out of the bath in the United Kingdom you can have an Occupational Therapist assessment for a bath lift, or chair, and yes hand/grab rails.  If you have a shower you can also be assessed for shower seats or stools.  (Subject to financial assessments).

If you have a disability in the United Kingdom and need to change your bathroom for arguments sake for a wet room, you can get the materials VAT free, which is quite a saving.  FINANCIAL HELP IF YOUR DISABLED. 

I wish Mike and I had known that as we had to pay for a new shower cubicle and removed the bath, as it was so much easier for me to cope, and I felt safer if I had to have shower when Mike was out. Even then it would take me time to recover and as my time with MS has gone through the years and more progression, then so has my recovery from a shower got longer and longer.

I know if I move now I will have a wet room installed, which will be so much easier for me.

There are many aids to help us with bathing these are just a few probably the most important ones.  I find a lot of my mobility aids from Betterlife Lloyds Pharmacy, they are very reasonable and dont forget you can purchase VAT free.  The Internet is full of shops selling mobility aids for bathing.

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Activities of Daily Living – Bathing also includes  hygiene activities such as shaving, washing face, brushing teeth and hair.

Again there are a myriad  of things you can get to help you. If you are struggling with any of them, ask your GP to refer you to an Occupational Therapist, or ring your local Adult Social Services who will visit you and do an assessment on your care needs which will include all six ADL.

  • Eating
  • Bathing
  • Dressing
  • Transferring
  • Toileting
  • Walking or moving around

Helpful_TipIf any of my readers suffer with Uhtoff’s phenomenon whether with MS or another similar neurological disorder keep a bottle of water handy.  Lately there has been more information about how to deal with this phenomenon and it can come down to simply cooling  your core temperature down by drinking cold water or drinks this is useful also in exercising when our core temperature will rise.  I do that now after a shower and it does help me to some degree.  Drinking Cold Water improves exercise tolerance in multiple sclerosis. 

In my journey with MS I have noticed over the years normal things I took for granted are slowly disappearing from my life. Its not enough punishment for me that I am now not able to drive, take my dog out for a walk, cook like I would like too and not just BING the microwave, it also takes away a simple pleasure like bathing.  So all of you out there enjoying a nice long soak in the bath please have one for me.

Candles, glass of cool chardonnay and some really lovely smelly bath salts absolutely bloody bliss.  What I would give to be able to just do that, something so so ordinary.

candles and wine
What I would give to have a hot bath, candles, glass of white wine and a real relaxation hour again. 


Helpful_TipRemember before you spend your hard earned money on Christmas presents or birthdays ASK before you buy if the recipient is to be someone suffering with MS.  It may seem a really lovely thought to buy someone like myself bath salts or bath sets, but sadly it will just gather dust on the bathroom window sill.  

Whatever you do when bathing be safe.  Remember flooring can get slippy, so have anti slip mats on the floor, in your bath and in your shower. Grab rails are essential and a small stool or chair in your shower where you can sit down. Its dangerous to stand up with MS in a hot shower, and most of you know that.  I have nearly sent myself through the shower screen before now simply by looking up and going dizzy. I never did that again.

Thanks for reading this and I hope it has been helpful. Please leave comments and tips which you think might help others with bathing. 






Just when I thought I had enough…….did a message come spiritually to remind me of good times?

Since my husband died and my life is now without him and the dust has settled from his death I have suffered many a day with anxiety and panic attacks.  I sit in my sitting room with a laptop stand and I can see both sides right to left, one side the outside front of my house and right straight into our conservatory where Mike used to sit fiddling and doing stuff and yes having his smoke.

I had to change it round as I found it stressful seeing his Ashes container every day, it did help a little bit. BUT to say I felt down and depressed would be an understatement. I just felt lost and alone and my MS was just about taking over my life now.  I had no more strength to fight it. What was the point really. I had been fighting this damn disease since 2000 really and whilst I had the support of my Mike it was durable, but now well I felt what was the point really, I am nearly 67 years old, tired in pain fed up it would be so easy to just let go.

I cant see in the future to better things how can there be?  My life just seems all doom and gloom.   MS is such a horrible disease really. Primary Progressive MS, is what it is. Progressive.  You never get a break from it.

OK imagine for just a few minutes having the worse flu ever in your life, every part of you aching, the fatigue making it impossible to even move far, blurred and double vision, and trying to walk with stiff and achy legs to just go and relieve yourself……….imagine that every single day of your life but in different degrees. Never ever know just how bad you will feel when you opened your eyes. That is what it is like for me living with PPMS.  Its being on a roller coaster ride you can never ever get off.


Every day it will be different.  I can literally feel ok for 10 minutes and like wow, this is cool I can walk without stiff legs, then five minutes later, having no energy to even be bothered to get up and try to go to the loo and just wishing you had one of those bottles you could pee in without having to get up.  Thats PPMS.

Since my Mike died its got a lot worse.  I have been thinking of moving as the house is too big for me, but well will it make much difference to the way I feel.

My life is just doom and gloom. How sad am I really. Yeh weeks of counselling have lifted me a bit but I just still cant get past this awful sense of loss I try to stay busy by tidying up cupboards when I have the energy and I have suddenly started to find lots of photos I had totally forgot about.

Remember if you have followed my journey I was not ony blessed with PPMS but also a rare disease  called Transient Epileptic Amnesia. After several good size seizures it took away some of my autobiography, so finding photographs of my life before all this happened can be a little boost to my moral.

The other day a particularly hard few days for me, I found a photo which I had forgotten about I know to you reading this it wont mean much, but there was I about 20 years ago sitting at the dinner table in my home and I was wearing my fabulous and wonderful leather trousers I had bought myself as a treat. I loved those trousers and they made me feel good.   The photo was a good boost for me also a bit sad, as both my daughters were there with their partners but sadly their marriages were not to be for the long term. My first grandson is in the foreground the little monkey Leon must have been about 5 there.

30776353_609479269403865_859996993_n Gosh on the  back wall is our old display cabinet which held all our treasures.

I had a thing at that time about collecting shire horses, and would spend hours and hours car booting or trawling Ebay for rare finds of antiques especially ceramics. I loved it; so much fun, I was the Ebay and car boot Queen.

I would as I have explained in another blog earlier take photographs and put them on to sale.   I had quite a success doing this. Looking at the photo reminded me of all the things I did back then before I got sick it showed I was happy.  I was so excited I found it I sent it to my daughters and we agreed it was about 20 years ago.   Looking at the picture I had no idea what happened to my lovely leather trousers it was kind of sad really that I couldn’t remember that.

A few days later after finding this photo my son in law came to do a few jobs for me. He has been a rock to me and so supportive Kris he is a great guy.

I asked him out of the blue would he mind checking the attic to see if there was anything up there as I am trying to have a good clear out of unnecessary stuff.  Without batting an eyelid he was off with ladder in hand.  He came back down with 3 black bags. He also found 2 old suitcases and a grotty looking medical cabinet which was in the house when we moved here, why we didn’t just chuck it away is beyond me lol.

3 large black bin backs full of stuff I have no memory of ever asking Mike to put stuff up there.

leather trousers

Kris opened the first bag and there they were the very first thing to come out a bit like that very funny Wallace and Gromit sketch The Wrong Trousers (although mine weren’t), he handed over to me ……….. yes you guessed it my LEATHER TROUSERS, perfect, not a mark on them.

I mean what were the chances of that happening really after 20 years.

More stuff came out of the bag ALL my clothing some new from my various holidays with mike, especially the holiday to the states we went too and yes clothing I wore on that fateful trip to Brazil in 2000 which was the start of my journey with MS.

Now I had wonderful holidays the memories from the clothing in my hands started to just spill over in my brain and I could remember so many good things we did together. The trip to USA where we went to Orlando for one week and Treasure Island for the second. We hated Orlando so split and went up to Daytona beach, Hossamonga Springs and then onto Crystal river to see the manatees. What a brilliant holiday that was.  It was just amazing.  I couldn’t believe it there was my blue dress I wore in the gardens at Sea World, and other items of clothing.


We went on down towards Treasure Island and had the best week ever just chilling on the pier fishing, and meeting lots of really lovely people who lived there. The holiday was just amazing.

Me fishing in gold coast USA. Yeh FISHING what a fab holiday.

Then there was the white shorts I practically lived in when we were in Brazil I loved those shorts so comfortable.  I couldn’t believe it they were there in that bag. I could even still wear them if I wanted too.  Again the memories of wonderful days with my husband came flooding in what a wonderful fantastic holiday we had right up until the day I went blind and my journey started. BUT wonderful memories.


I felt elated, and could feel Mike all around me as though he was just there showing me, comforting me, loving me still from the afterlife. Reminding me of all the good times I had with him and I suppose in spirit trying to show me I could still have a good life if only I believed more in myself.

He was still here I am sure of it. I mean really I know there will be sceptics reading this but what were the chances really of finding all these cloths that day and after finding a photograph of happier times?

Fanciful nonsense, or Mike trying to still comfort his wife even though he left me in body, perhaps he is here in spirit I think I choose to believe that we were connected and always knew what the other was going to say before we needed too and perhaps we were still doing it.

I am blessed really even with PPMS I know now I will never truly be alone………………and have been given a boost to still fight this dreadful disease it wont make me a statistic just quite yet. 






Trying to deal with bereavement…and coping mechanisms…………

my five stages of grief.When my husband died and the funeral was over I realised that was it basically nearly 30 years of my life well sort of ended as i knew it. No more sharing moments with the same person, waking up to them, being with them, laughing with them, moaning at them, it was over.

Just how do you find the strength to carry on without a loved one when you just feel like throwing the duvet over your head and staying there and not facing anything. Anxiety levels going crazy.

They say the stages of the grief cycle has five parts to it.  Well believe me I am no stranger to the 5 stages of grief mine started when I realised I could no longer work or live as a normal person ever again, when this journey of mine with MS started. OK I had no idea what the matter was, the label was immaterial actually because the results were the same LABEL or NO LABEL. 

One day your working a job you love and you know your good at it, the next your wiling away your life on a recliner chair confused and feeling alone, as you cant understand why suddenly your life has just well fragmented and fallen apart. No more getting up excited for that day with your students, or working through copious amounts of paperwork to put into place a new qualification. No more challenging days, just days of drudgery, boredom, confusion and pain.

Oh my I loved my job so much, and i even met our local member of parliament who presented two of my students with a trophy for best students, I was responsible for their achievements because I cared enough to help them get through learning issues and do well in their chosen subjects which helped both of them move on to better things in life, that was the sort of person I was.

David Drew with my 2 learners I am on right facing.

Sadly I left all that behind on the 11th September 2006 no more would I help others to achieve their goals, as I was struggling even to achieve mine and that was a simple one to get out of bed to face another day.

Yes I went through the 5 stages of grief way back then.


When I lost my mother on the 21st February 2016 I was devastated she wasn’t meant to die the way she did, and leave her family too early even though she was 93, but I coped and I coped well because I had the support of my husband with me. That was the difference between her death and my husbands. My husband Mike helped me get through the dark days of my mothers passing.  He was amazing and always there for me.  That was the sort of man Mike was loving and caring to the people he loved the most.  He knew how much my mother meant to me.

So when I was suddenly faced with his death which was just not expected the pinball-1280-2-1-1495214597842_1280wshock of loosing my husband so quickly and all the subsequent events that came after just drove my illness onto a manic drive like some crazy pin ball machine, i was bounced from one emotion to another and every time i hit the sides the pain was horrific.

‘Normal functioning’ to start with was a must.  Just to get up in the morning was hard enough without a disease like MS, but getting up in the morning with MS was really difficult and waking up on my own was so hard I had no buffer, no one to turn too for comfort just emptiness and that bloody empty chair.

No more Mike to scream and shout at when my MS was driving me insane. The quiet in the house was almost deafening which made a change for me, as usually I would be assaulted every day by my Mike chatting ten to the dozen, 2 televisions going on full pelt all day and with MS comes some strange and weird symptoms people may have never heard of like Hypercusis.

The-problems-is3Now that is a beaut. How can noise make your ears feel as though they are going to bleed with pain.   Believe me when I was having a bad bout of this my poor hubby got it in the neck as it would make me really feel irritable and irrational I suppose us ladies could even liken it to a really bad case of PMT.

Now there was no noise. Just me. Just me feeling isolated and wretched. I would have sold my soul to the devil at one point just to be able to shout at my hubby again – bargaining.

I suddenly realised my journey with MS was now going to be on my own without the support of my husband. He had been with me right through the journey and would help me whenever he could.  Now I was facing it all on my own.  How scary was that really to suddenly realise your support network was gone. If you had a bad night trying to sleep in pain I knew he was there to help me.

The times I had attacks with my Transient Epileptic Amnesia where I forgot who I was and he took over and got me to the hospital, now I am frightened of waking up to literally nothing. If I have another attack on my own how will I know to get help it scares me.

For the first month after he died and his funeral, I blamed myself for his death. Perhaps if i had insisted he had the doctor out on the Sunday he would still be with me now.  I should have really told him straight I am getting the doctor out and that is that, but he made such a fuss about it, and getting into a state it was making him worse, so I left it, but made sure I kept an eye on his stats, and he did improve by Sunday evening.

I blame myself for not staying with him all day on the Monday whilst he was in hospital but he seemed so much better and wanted his family to visit and he knew with my MS it was too much for me, and he wanted me to go and rest.

I HATE MY MS, it robbed me of having more time with him I could have been with him and comforted him, but no my MS WAS not about to be compassionate enough for me to have that one good thing in my life a moment more with my husband so I might have more memories of him to remember him by. No it was selfish. The next time I saw my beloved he was in a death coma and I couldn’t say anything to him although I am sure he did know I was there, it wasn’t the same.

I was so angry with myself and then I became angry with Mike, it sounds totally irrational even writing it down BUT I was angry with him for dying. How could he leave me he never fought for us. He could have stopped smoking earlier, drank less so many stupid things going through my mind.  Why couldn’t he have tried harder it was like he had given up on us both. I never gave up no matter how bad I felt, how ill I was how much pain I was in, I never gave up, as I loved him and wanted to be with him.  I wish i had given up now, anything would have been easier then enduring this pain.

I can cope with the pain of my MS but the pain of loosing Mike is really hard.  We were not ready for a loss like this.  He only retired in 2015 and even then he went back and forth to work when they needed him.  He was such a strong person even when he looked frail and ill and believe me at times he looked terrible he would always bounce back.

Mikes retirement 24 April 2015 worked nearly 40 years in the same place, and got a flask and silly mouse trap as a retirement gift. No gold watch.

Oh my god we were supposed to spend the rest of our lives together in retirement. What was it all for, my fighting this disease every day so that we might have a life together.  I looked forward to retirement, we had plans that is why Mike went to the Isle of Wight that fateful week before he died, as we really wanted to be by the sea.  Just be together and do some fishing, chilling and of course arguing why not, but have a life together after working so hard. We both of us started work at around 14 years of age well that was the age of my first job.

I waited to find the right man, and we found each later in life I was in my forties we had nearly 30 years together, 10 of which were challenging with my illness and Mikes illness but we stuck with it and stuck together.

Now I sit here writing this on my own, my journey still goes on, Mikes was denied him by a higher being for some reason only known to the almighty.  Mike never deserved to die like that he worked so so hard everyday. He never took time off work unless he was really sick which was rare.

I cant bear it in our home now.  I expect to see him sat in the conservatory having his cigarette and playing with his little radio watching the aeroplanes land he had a software on his computer. He was a very clever man, and had his amateur radio licence. He would spend hours talking to people all over the world on CB radios.

Timberjack was his handle. All gone now.  We will never go fishing again on Minehead pier, he will never again win a trophy with his classic cars.   The realisation hits you suddenly you are supposed to get to the point of acceptance of a death, how can you really?

Maybe I am just taking longer as I just still feel so angry at his loss. Where is the motivation to move forward in my life?  How can I find the strength to keep going when my MS is constantly kicking my arse all the time.

Why am I bothering really to keep healthy, keep going what is driving me. I wish I knew the answer to that as I sit here surrounded by my dog and 2 cats listening to Dinah Washington, I’m mad about the boy which kind of seems quite apt at the moment. I am mad about the boy, mad at him and mad about him.

I keep going my motivation in a way is to make sure no one forgets Mike, I don’t want his memory to just die with him, fade away so he will just become a distant memory of a person who lived. I want people to be reminded of him how much he touched so many peoples lives, enriched them, changed them, helped them.   I want them to appreciate in life you have special people around you and you must NEVER ever ever take them for granted as one day they just might not be there anymore.

I hope my MS will let me get through this and allow me to move forward. My next step I feel is to move to a smaller place. I came here with Mike, and I feel perhaps now its time to leave here with him, and start a new chapter in our lives and another part for me of my journey with MS.  I am not going to let my MS defeat me even though every part of my being is screaming for me to let go, if I do that then I loose him again, and I am not prepared to do that just yet.

Now the real work begins I have gone through once again the five stages of grief I have finally accepted his passing, and now I need to find myself again.


My next blog – moving forward and acceptance and change.





The fallout from bereavement – and the challenge of EMOTIONAL issues that come with Multiple Sclerosis.

As my husband took his very last breath on earth and went silent, little did I know the after affects and shock that would continue for months afterwards affecting me emotionally and physically.

You have these diseases given you like Multiple Sclerosis, but weirdly enough whilst I was with him for HIS last journey I forgot for just a time I actually had it, my only thoughts were to hold him tight and squeeze him and make his last minutes with me, of comfort and love.  I just had no other thoughts but I do remember crying “don’t leave me, don’t leave me I love you………”   The rest is just a blur.

I realise people reading this will not have MS, so they may not be aware of how just having it can screw with your emotions, it is actually part of the disease as lesions may invade into parts of your brain that can turn you into a jabbering lunatic with the added stress of grief.  There are not many people with MS who don’t actually have this with their MS but will be with varying degrees. (Remember if you have been following my blog MS is classed as  a snowflake disease everyone is different).

For the uninitiated:

Common emotional symptoms that can occur with MS include:

  1. Mood swings or emotional lability
  2. Anxiety, including generalised anxiety
  3. Pseudobulbar affect, which involves uncontrollable laughter and/or crying
  4. Stress
  5. Depression

So without adding anything extra we are already up against it. I have had all the above. My journey being a long one with MS and not knowing why I was so sick wore me down and yes depression was part of my issues.

I cannot cope with stress at all, and found myself shutting down on things or people I knew would actually affect my stress levels, so that I may survive another day without an exacerbation of symptoms. Oh yes did I not mention it, any tiny bit of stress can trigger a myriad of symptoms you thought had gone. So exit stress if you can obviously but sadly it is not always possible.

Oh and yes Number 3 above is real, I have had it. Its bizarre PBApba10

Poor Mike (my hubby) at times when this has happened to me I am sure he thought I was loosing my marbles. You can be watching a show on T.V. which is not even sad and start to cry then it turns in manic laughing. Before I knew what it was in my own mind I thought I was loosing my mind.   Once I realised it was PBA I was actually more able to deal with it.

When mike died later I did this the same; my emotions were are such a high level it triggered a PBA attack and it made me feel awful.  Thank goodness it was in the privacy of my own home.

If anyone reading this has lost a loved one and is responsible for dealing with their death you are suddenly faced with so many things to do that your Adrenalin thankfully kicks in and you don’t even have take time to draw a breath or think about grieving for the person who has just left you.   I knew even though I was ill it was my responsibility to make sure my beloved had the best passing anyone could have out of respect for him and all he gave to me and our marriage.

I was given a number to ring the next day to report his death to the bereavement office and have his death registered to enable me to ring a Funeral Home. All the time I was in shock yes, but comforted by so many people my brain just shut down on the tragedy that had occurred and somehow really I don’t know how perhaps auto pilot I managed to get through the next few days in a dream world just going through the motions. I cant remember much to be honest just basic stuff.

Everyone is always telling me that I am a strong person you will get through this. What is it about this phrase that is so easily said to people is it for comfort?  You will be fine your a “strong person”.   Am I?  Sometimes I doubt that.

I am good at covering up my feelings that is for sure. I find comfort in humour one of my ways to cope when facing stress is to binge on comedy on the T.V.  I have been blessed with an amazing sense of humour and use it to deal with stressful and awkward situations.  Somehow I follow my father in that in me is an inherent  and deep rooted urge which for me comes in the form of  a woman’s gotta do what a woman’s gotta do and my father was the same (but obviously I have changed the gender).

I have the ability to stay focused and get things done you just have to point me in the right direction and like a clockwork toy as long as you wind me up (not literally), I will keep going regardless of what is going on around me (I can blank it out), and just get on with it. Does that make me a strong person I have no idea.

“The weak fall, but the strong will remain and never go under!”
Anne Frank, The Diary of a Young Girl.

I needed all the strength I could muster for what was to come.

A surprise phone call from the Bereavement Office sent me into a tail spin of anxiety, emotions, and depression.

I can remember what the lady said as if it was today. “Mrs Trim condolences on the loss of your husband MichaelTrim, sorry to bother you but the Coroner would like to talk to you as the attending doctor will not sign the death certificate off on your husband……….”

Enter the Coroner…………..

The dreaded phone call from the Corner came a few hours later.  My brain was in a spin….for me seeing coroners portrayed on T.V. meant all kinds of things like wrong doings, mysterious death yet I was told at the beginning my husband diagnosis on entering hospital was Pneumonia with Sepsis and the next 24 hours were crucial, so his death wasn’t unexpected and it had prepared me for possibilities. ae6963c9e5546eabd63fefb4b946111f

I had visions fleetingly in my brain of some mad nurse haunting the corridors of the hospital seeking out the weak and filling them with a syringe of some obnoxious chemicals what goes’ through your mind is quite bizarre.  It was almost real like a slow motion picture of a sinister figure seeking out my husband.  I felt finally i was going crazy right?

I shook this weird image out of my brain and tried to listen to what he was saying.  He kept asking me if Mike had worked with asbestos, well I know he had over the years as he often told me he thought his COPD was down to this fact rather then smoking (most smokers have to find a reason or an excuse why their smoking is not harmful). It was odd though as his oxygen levels were always very high you would think someone with COPD would have low oxygen.

Anyway back to coroner they were investigating the possibility of an industrial death so would have to perform an autopsy as the doctor attending wasn’t happy with the way my husband died to the actual evidence and test he had. The word AUTOPSY made me feel physically sick I had to hang onto something for fear of falling.  The idea of my poor Mike being  subjected to this ordeal was horrifying.  My stress levels were hitting the roof and I felt as though i was going to loose it completely.

It was bad enough loosing him, but to think of him that way was horrible in the extreme. The coroner assured my husbands remains would be dealt with respectfully and would get an answer as soon as possible they did the autopsy on the 10th October.

Mike just hated being cold and again I know weird thoughts intruded my brain of my poor hubby laying inside one of those cold drawers in a mortuary he would have hated it, and sadly was there for 7 days before the autopsy then what seemed an age before I could finally lay him to rest.  Really stupid thoughts I mean he had died so wouldn’t be feeling anything BUT………….honestly he hated the cold with a vengeance.

In the meantime remember I am also dealing with telling the family, organising his funeral so many things to deal with. Paperwork coming out of my ears as the saying goes so much to sort out even for a healthy person is challenging.  68c1836a80a78b8cec227fa236773d9a

Having to remember to inform so many people of his death oh you can do it once now thankfully I did use that service but it didn’t work exactly as I found out later as some company’s were missed out.

I met with the funeral director and organised the funeral, wake, and the food and time just passed in a daze I have no real recollection of the days as I was just on auto pilot. I couldn’t quite get it in my head my lovely husband I had been with since 1991, I would never see again alive, never hear his voice, or see his lovely blue mischievous eyes or moan at him about leaving the place in a mess.   Never talk to him about the world and its problems, share moments both good and bad.  He was gone. Just gone.

In the background ever vigilant was my MS just waiting for me to crack up, to get weak and allow it to run riot in my body and cause havoc but how; I have no idea I never allowed it to take over, I had just too much to deal with, I wanted my husbands passing to be the best it could be and to that end I spent a lot of time planning and shutting everything else out and then the second phone call from the coroner came.

The Coroner rang me quickly on the 11th October to tell me the autopsy was inconclusive and they would have to take samples of tissues and send them off to a special laboratory it could take 2 months to get answers, I was so upset and shocked. I had no idea what was going on, surely it couldn’t be all that complicated could it?  If he had asbestos poisoning wouldn’t it have shown but apparently it doesn’t work that way and he also dropped another bomb shell at my feet there would have to be an inquest which was booked for the 3rd March 2018.  I simply couldn’t get my head around any of this, 2018, inquest, inconclusive my brain was just in a whirl.

To be honest I didn’t care how he died, he died, and I just wanted to be able to mourn him, how could I with all this hanging over my head.

Worse was to come on the 13th October another letter from the Coroner arrived.  I recognised the cream/yellow envelope so I quickly opened it not really expecting much perhaps just a permission slip or something but what I read well it really put my MS into a tail spin that day which took several weeks to get on a kilter of some normalcy.

I mean really how insensitive for the Coroners Office to send a letter just after your loved ones passing actually asking what would I like them to do with the MATERIAL they had removed for histology testing. letter from coroner

Suddenly I am faced with a decision about samples they had removed. The point being they had to keep them anyway for 12 months before they could legally dispose of them.  Then reading what Material they had taken made me feel sick I almost passed out, sounds a bit dramatic I suppose but my husband had only died 10 days ago I was trying to get used to that idea, then to have to face decisions and talking about bits of tissue they had removed from him was horrific. 


I was just shaking and crying, the letter both pages just slipped from my hands and fell floating to the floor almost in slow motion to land by my feet. I was crying hysterically by then and sobbing so hard I thought I would die and lucky for me I was able to grab hold of the hallway grab rail otherwise I would have fallen badly.  I managed to make my way crying and blind with tears to the sofa to just sit down and break my heart because finally the pain of Mikes death had hit me.  It had come down to the realisation that my husband was just a body with tissue and material which needed to be taken from him to find out why he died so suddenly.  It took me a long time to get myself back to some semblance of normality after reading that.

I actually contacted my solicitor who was advising me about the possibility of his death being industrial, not because I wanted compensation but I wanted justice for my husband if he had died because of something noxious like asbestos.  She was brilliant and calmed me down and took over and contacted the coroner and told them that there would be no decisions as yet until the results were in from the tests.

I have to say that I really don’t know how I got through those days before his funeral we were able to carry on with arrangements and I was given a temporary Death Certificate which enabled me to continue with the plans for his funeral thankfully and my lovely Mike took his last journey on  the 25th October at 11am 2017.

When I got to the crematorium on that sad day following my husbands coffin in the hearse I was shocked as there was a queue of people waiting to pay their last respects to him. It warmed my heart and made it all so much easier to bear to see all those faces some I knew others strangers there must have been over two hundred mourners turn up which just showed how much love people had for him.

His funeral was wonderful. It was a humanist funeral and we celebrated his life. He loved spitfires always wanted to fly one or be in one, also loved the engine sound (Merlin), so I gave him his last wish and his coffin had spitfires printed around the outside it looked brilliant I have to say and my grandson Conner wore his flight jacket as a poll bearer and when the curtains went down for his last journey we had the sound of spitfires flying over head as a tribute to him, it was amazing.

The reading was all about Mike and what sort of man he was.  It was all so comforting.  Yes I cried buckets but I knew he would have loved his send off. We went to our local social club across the road from us for his wake he would have loved that and it was well attended and everyone had the chance to talk about him.   If he was looking down on us, he would have been really pleased I know it.

How I got through that day I have no idea I don’t remember much to be honest, but my family were very supportive and the love towards my husband shown by everyone there made it all bearable.

When the funeral is over you hope you can start to heal and grieve but sadly when you have the question mark hanging over his death it is simply not that easy. You just don’t know how to deal with it. 

I was starting to get weak. Suddenly from a lot of people around me all the time there was no one the support I had gone. I was just left to sit on my own and the feeling of loss was so overpowering.

I had lost my husband, my extended family a huge part of my life was just wiped away when he died.  All his friends who I had taken into my home and heart and his family slowly distanced themselves from me, and I found myself more and more alone.  Nearly 30 years wiped out. Then the MS found my Achilles tendon loneliness, sadness, despair and feeling FORSAKEN.  My daughter painted me a picture of me as a forsaken angel it was exactly how I felt.


My MS ran riot giving me anxiety and panic attacks, depression and pain oh yes the pain someday’s was just too much to bear not just the physical pain but the emotional pain of losing my husband.

My only hope was to have counselling which i embarked on and it did help, and slowly support from family and friends became more routine, and my husbands sister Lynne would visit and ring me regularly and still does and we talk.  It all helps and my family have all been good and tried to support me as much as they can.  My friends on Facebook always supportive without a lot of them I don’t think i would have gotten through this time.  I even received a beautiful bouquet of flowers from a friend in America Maureen we have been friends with for quite a few years now, it was so touching I cried. I had so many lovely cards which I have kept and one day will take the time to put them all in a scrapbook I received other flowers from Facebook but my memory is not good now and I disgracefully have forgotten who sent them, if they read this I hope they understand and will forgive me.

maureens flowers

I made a tribute to Mike in the conservatory. He just loved sitting in the conservatory it was his place.  I set up photos and a board of all the things that Mike did over his life. He was an amazing man.  l added the book of condolences people wrote in so if anyone does come to see me they can share their experiences of him and memories and write it down if they feel they would like too. I often write in it and it does comfort me.

I brought his ashes home and he is in the conservatory which he loved.

I have to tell you about an amazing thing that happened the day I bought him home with my two friends, Jane and Jade.

We have chickens especially 3 very large rare hens Pavlovskaya a special breed.  Mike loved them and they loved him. Mike would spend hours with the chickens he had an empathy with them.  The Pavlovskaya would seek him out and I knew they had been in with him as they would leave their evidence of feather or err poop.

When we bought Mike home there in front of the conservatory were all three Pavovskaya stood in a line, and all the other chickens were behind them almost on parade saluting him. Non of them moved they were very still and just watched us then suddenly they just turned around and moved away, it was one of the weirdest things we had ever seen. I am convinced they were paying a tribute to him.

The MS is out of control sadly and progressing at a fast rate I allowed it to take a hold in my weakest moments. Its hard enough to lose someone without MS, but when you are ill with a disease that zaps you at every opportunity you need all the support you can get.

IF you ever have a friend or member of family with MS and they appear abrupt or irritable or bad tempered and argumentative, forgive them.   Mike did, he knew when I was angry and yes screaming at him for something stupid it wasn’t me doing it, it was my illness, he would just look at me, not retaliate and wait for me to calm down.

We don’t  want to be this way who does.  We don’t want to spend days anxious, crying and laughing at the wrong times, totally depressed and devoid of emotions. or the opposite and ranting and raving at the most stupid things. 3566756900000578-3646875-image-a-14_1466173868638

Just put yourself in our shoes for just a day, and see how hard it is.

Yes the fallout from my husbands death is continuous even after seven months it is not slowing down.   The worse part is the anxiety and panic attacks and STRESS I am experiencing I am hoping with time and healing it will all settle down.

Just remember if you know someone who has lost a loved one, its all very good to comfort them at the time, but grief sadly is ongoing and doesn’t just go away, and in actual fact becomes harder after the funeral and it is then that someone mourning needs more support so just a little message, “how are you” doesn’t have to be much.

Finally after waiting 2 months I had the last phone call from the Coroner. . The sample for histology that was sent came back with no plaques for asbestos.  Without the plaques they could not go forward with an industrial death however,  there was fibrosis found in his lungs which is a typical thing to see if someone was affected by asbestos but can also be caused through infections and other agents.

Two doctors had to confer about the results  and they have decided to log it as a natural death caused by  pneumonia which finally enabled me to register his death.  I felt relief to be honest total relief and I think I even shocked the coroner when I said what a relief. The reason being?  It was OVER, I could now grieve why they wanted to do an autopsy has never been made clear to me, as I know the admitting doctor when Mike was taken to hospital clearly said he had Pneumonia with Sepsis so what happened in the 2 days he was there is always going to remain a mystery.

The inquest was cancelled and we wouldn’t be put through any more pain over his death.

My journey now begins without my husband that is going to be the hardest journey of them all.   Its been hell for months and my MS relentless now its time I started to let myself heal.  I just hope the beast or the MonSter allows me to take a break.

Depression is a real thing remember a person may look well, and happy and smiling but behind the mask they can be hurting really bad.

“Man goes to doctor. Says he’s depressed. Says life seems harsh and cruel. Says he feels all alone in a threatening world. Doctor says, ‘Treatment is simple. Great clown, Pagliacci, is in town tonight. Go and see him. That should pick you up.’ Man bursts into tears. Says, ‘But doctor, I am Pagliacci.’ ”

Trying to deal with bereavement….moving forward and coping mechanisms…………

watch out for my next blog..trying to move on















Socialising is a pain…….really

I was blessed with Primary Progressive Multiple Sclerosis.  Who would know that one day I would be diagnosed with it after so many years trying to work out why I felt so rotten all the time.  Bit of a shock to the system I can tell you, but well lots of people have things to contend with don’t they in life, and as we get older, bits start to fall off and we get older, and more tired.

Who would have thought that having MS would turn me from a happy fun loving person, who loved to talk and meet people and have lots of friends. I loved to entertain my family especially for Christmas and special occasions. Mike and I would often hold Bar B Q’s in the summer and he was actually a very accomplished cook with the charcoal. Life was good really.

Mike and I often went on holiday together and we would take his mother too. We went to USA, Greece, Brazil, Malta, corfu, crete, rhodes and other places.   I was full of energy and had a quick wit and mind and well actually quite a good sense of humour.   I had a great job, worked at least 60 hours a week, ran 11 learning centres and 54 tutors were in my care.

I have accepted my illness what else can I do really?  It is here and now i have learnt how to deal with this uninvited visitor.

I hate it so much as it has taken so much of ME away and it robbed me of better times with my Mike.

I am never really sure who is actually standing in the mirror it looks like me, but well it doesn’t feel like me. It feels like my body and brain is there but like the cliff edge lots of who I was has been eroded away and I am kind of left with this accumulation of cells, and blood, and fibre and body that only has the capacity to actually exist with half of what it had.   Like a glass half empty kind of feeling. Half empty


Hands up how many of you reading this have a calendar or diary, and its filled with dates and places or things you are going to do?  I don’t have a diary or a calendar. I have a white board and if I am lucky to actually write on it a visitor is coming or I am booked to go and visit someone, do something really cool, if I have to change it at short notice I can simply WIPE IT OFF, like well my MS will have WIPED me out that day. I never know where this disease is going to take me in anyone particular day.

I can have a really good nights sleep and a rotten day, and vice versa.

Friends or family will invite me for a party, or gathering and I can write it down on my white board but I have no idea if well I will be well enough to actually get there.

Fatigue is my enemy and pain. Now let’s get this straight ok, fatigue in MS is not just feeling a tad tired and a  quick sit-down on the sofa will resolve it. No way for people with MS its like being hit by the worse flu ever, then have to run a marathon.   OK think about it, if you have ever had flu, and your body is just sunk into your mattress and you cant get up, that is MS fatigue.  MS Fatigue can just hit you in seconds just doing something silly like talking to someone on the phone.   energy-conservation-in-ms-during-the-holidays-julie-huerbin-otrl-mscs-3-638

I am usually not too bad when I wake up and I have learnt to work around my fatigue. I do everything first thing but as the day progresses so does my fatigue a bit like a battery winding down.  By 2pm I am wiped out like a hard drive nothing left in it of any use, and just resting. Just talking is exhausting and it can make me so tired I sit there yawning and gasping for air which must look pretty rude, but believe me I don’t do it on purpose.

Just going out is a huge effort for someone with PPMS. It takes a huge effort yes it is good to get out, but you know the consequences are going to be even worse fatigue when you get home, and pain.

Yes pain. There are some people even doctors sadly who think there is no pain in MS wrong. Yes some people when they first start their journey may not be bothered with too much Neuropathic pain it depends largely on where their lesions are located.

Mine are in my spine.  I suffer Neuropathic pain 247, it never stops or gives me a break ever.  I cope with it during the day because I am doing things, like writing this to distract myself.  Now going out will make it worse because my brain has to work harder to keep me safe which makes me more fatigued and then allows the pain to run riot.

Pain burning, fizzing, tingling, buzzing, prickly, spasms and cramp, muscle stiffness,  oh and one of the worse the ITCH.  I dont mean a little itch, my hand and fingers will feel like I have had the worse CHILBLAINS ever and you cannot get relief.  Lol the times I have had to check my scalp to make sure I didn’t have nits the itchy patch on your leg you scratch raw it is relentless.   It can change in seconds. Its like a roulette wheel where will the ball land next…..

Just knowing if you go out it can give you so much pain you want to scream and so much fatigue you want to just stay on your recliner why on earth would you want to go out to deal with that, or have people come to see you and leave you like that?

Well you have to really try hard to make the effort but please whoever reads this and doesn’t suffer from an auto immune or chronic illness or MS, be patient with us, we don’t want to be boring or upset you, we are sick sadly and its hard really hard to be this way when you have led a really exciting and full life.

I had my family over for Easter lunch and I made a huge effort to put on food, yes it was all frozen and zapped in microwave but I really enjoyed myself, and later I had other members of my immediate family turn up and my Easter day was lovely, but now today even writing this I am so fatigued and in pain, I just want to curl up and do nothing, but I am determined to try and have a glass half full day for a change but at the moment my battery is winding down very fast, so I will close now, hope you have a little more insight into my journey.

Have a good day and thanks for reading.

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Little me