We’ve all experienced difficult times and painful events. Moving forwards and healing means processing what’s happened and learning to be at peace with it, whether that means learning from it, forgiving someone who’s harmed us,…
February 2016 was an horrific month for me. I lost my beloved mother on the 21st and then on the 24th I went to see my neurologist and he gave me the news I had been waiting to hear for so long, you have Primary Progressive MS. Too late to tell my mum what was wrong with me, even though we thought it was MS.
My neurologist and I had been together 10 years. My neurologist had always felt there was something like MS going on but was unable to give me a firm diagnoses as there was a protocol to go through called the McDonald Criteria.
I kept missing it by one point then on that day finally the last piece of the jigsaw had come together and he was able to give me a life changing diagnosis.
A label. I was numb anyway couldn’t feel much because I was grieving for my mother still in shock over her horrific passing. I almost hugged my neurologist because of my emotional state. Basically his parting words were to me, your strong Mrs Trim, if you need anything talk to your MS nurse, and keep your doctor in the loop. So far I have never seen him again.
MS Nurse. Ah the invisible helper. You can if your lucky get hold of the elusive MS nurse who sadly is so overworked they are rarer then hens teeth. We are blessed with two I believe for a large area a big city who has to cope with so many people. You ring them if your feel anxious about something. Firstly you have to be assigned one. I had been apparently; but typically I was lost in the system.
I felt deserted by the NHS. I was told my life is officially changed, you have a progressive disease go forth and deal with it. I felt like someone had plonked me on a desert island and i was just sat there watching my life fly by. It took a full year to finally be assigned an MS nurse it was my new doctor who pushed for it. I saw my MS nurse just before my husband died in October 2017.
Well that was an experience. Off I went on my appointment. Basically to be told very little. I had been coping with eye issues really bad. The MS nurse decided to check my eyes by using a colour screen chart they use for colour blindness. Now that was a hoot as he was colour blind himself, so my care worker at the time had to keep him informed of what the colour was. I did mention this before in one of my other blogs. They use these to see if you can see the number.
I gather that I failed the test and he told me that for the last few months my symptoms would indicate another attack of Optical Neuritis which had been totally missed by the GP. The only thing you can do for this is steroids but it was too late for me so I had to expect about a year of on and off symptoms, which well yes I actually did get lucky me.
Who knew a diagnosis of Primary Progressive Multiple Sclerosis would leave you feeling alone and frightened. I kind of knew what Robinson Crusoe had felt being stranded on an island waiting for help and it never ever seeming to arrive. Yes that was fiction mine is reality which makes it all the worse.
Finally another occasion to see the MS Nurse in 2018 I was told that an appointment would be scheduled for me to see my neurologist in March 2019 to discuss the new drug for PPMS sufferers.
Ocrevus (ocrelizumab) could be my saviour, help me to slow down the progression, so obviously it was HOPE for me. Maybe finally I could get off this island and join the human race again. I waited for notice of a pending appointment nothing.
Then I read on a forum for MS sufferers the news………….
The NHS will not fund treatment with Roche’s recently-approved multiple sclerosis drug Ocrevus, even though it is the only treatment for the primary progressive form of the disease.
The final appraisal document from the National Institute for Health and Care Excellence (NICE) has caused consternation among patients – and an immediate petition from the MS Society – for Roche, NHS England and NICE to reach an agreement that will allow the drug to be covered for PPMS.
It was down to MONEY again. It cost too much, never mind the cost of human suffering. We were to be denied a possible drug that could make our journey easier. Money we were not worthy of such a sacrifice. It made me so mad.
I believe that is why so far no appointment for the neurologist as he knows there is really nothing he can do for me.
So what now for me and hundreds of other sufferers of Primary Progressive MS. Do we just sit drifting along for years whiling away our days hoping for help to arrive? I feel like the lost. Its all down to money the price of life. Its available if its PAID for but costs thousands of pounds. It is thankfully available for people suffering with RRMS if they are in the early stages.
I know the chances of being accepted for this drug were pretty remote as it’s designed more for early stage PPMS but someone out there may have been a great candidate for it and benefit from this drug.
In the meantime I have done all I can to help myself. I have read everything I can about my illness whats good what is not, tried to stay positive.
Primary Progressive MS is really pretty much unknown about. Its one of those ADD on branches of a disease. Therefore not so much research done about it. I know more people now being diagnosed with it, so perhaps it is time the powers that be start to deal with it more. You cant just dump people on top of a scrap heap without at least trying to help them. 10 – 15,000 people in the UK are now being diagnosed with this disease. So basically 1 in 8 people will be waiting to be diagnosed.
Yes I feel deserted lost and alone. Thank goodness for friends and family is all I can say.
I know there is more research going on and hopefully in a few years people newly diagnosed will be helped more. Thankfully this disease can be slow to progress and even you can have a period of feeling better. Like it goes into idle mode.
I used to call this this stage the eye of the storm. I would say to my hubby the eye of the storm is here and I am smack bang in the middle as my illness has suddenly gone all calm, my legs have no spasms even, like for a few minutes a little longer if I am lucky all is calm at sea and I can see the light through the doom and gloom of my illness.
Then BLAM……….. havoc. Suddenly the disease will come out of its idle stage and goes nuts for a few days like it has to catch up on all the pain it has not given me.
Stupid disease, sometimes I would rather it just get on with it. I know silly to say but you just don’t know where you are with it. I haven’t had a truly calm moment for several years now, just more or less at the same level so I suppose in a way that is good.
After my husband died I did go down hill fast but in the last six months thankfully I feel with positivity and less stress I am on an even keel.
Right I am off; my island is calling me, I shall while away my days in quiet contemplation of life, and chill out listening to music and wait, and wait and who knows maybe one day a brown envelope with my name may come plopping on the mat and it will be from my neurologist to finally ask to see me………….
Who knows maybe there will be a letter today……
UPDATE. 19th July 2019. Finally the letter came and I saw my neurologist on Tuesday 16th July after THREE YEARS. It was a good appointment. He was very welcoming and sad to hear about my husband. Anyway he offered me a chance of Ocrevus but said it was a long road to find if i actually would be able to go on it, and yes my age was against me. I have all the stuff to read about it, but feel its too late for me, and I am not comfortable with the side effects, and the warning that if there is breast cancer in the family the chances of it are made much higher if i start this meds. It also stirs up your autoimmune system and leaves you more open to stuff like, flu, herpes, hepatitis, shingles the list is quite vast.
I am not sure that I want to take all these risks. I live in sheltered and a lot of people get sick in the winter here a lot of them being elderly so I am more open to catching something.
I have decided though if you want support you wont necessarily get it from the NHS. You need to join forums, start a blog, if you have MS join the Society and go for meetings (a bit like joining the AA lol), join on line groups and hope too your family will support you through this life changing disease. BUT remember that everyone has their own stuff to deal with and may not have time to help. Find a hobby, if your younger then get out with friends and have a life. MS is not going anywhere, so we might as well get on with our life as best we can.
So finally NICE have approved this medication for PPMS. I dont think I will be able to get it as my EDSS score is 7 not sure how long i have had it, but great news for those PPMSers who have just been diagnosed or recently diagnosed as its a start. A start a hope to get better. I am so relieved for all my friends with this disease.
Thanks to Caz who runs a fabulous web site for Chronic Illness
Its very informative.
ANIMALS AS THERAPY
Ok all those reading this blog hands up who has an animal, a cat, dog, hamster, bird, horse or chicken etc?
I am a firm believer that animals can help us when we are suffering from a chronic illness like Multiple Sclerosis, and other long term diseases.
I needed to find something to get me up in the morning. That was my challenge in life, to get up. Everyday come rain, snow or sunshine. I knew without it I was doomed or lost. Yes I had a hubby but he could take care of himself and was away a lot with his job, so I was left on my own.
I had my trusted Lucy dog who was always by my side and I knew that she needed a walk, but to me it was earlier that i needed to get up.
I had my first chicken when I was 10 years old. Sandy. We lived in Malta at the time, and I used to care for her and only I was allowed to collect her egg everyday. The memories of her came back to me, and the idea formed in my mind well why not have a few chickens. So that is what happened.
I purchased four hybrids, and it was a lot of fun but also hard work. Every morning at dawns light I had to get up and let them out, feed them and clean them. It seemed an endless chore but I stuck with it and soon was rewarded with lovely fresh eggs.
Now it wasnt the cleaning, or the feeding that ended in me having to move them on, it was their noise. They constantly argued with each other, and when they were ready to lay an egg would let off the worse screeching noise you could imagine. I had no idea at the time that one of my new symptoms of MS was going to be hypercusis!
Suddenly from no where their noise became upsetting, painful to me and when they were really loud, I felt irrationally angry and tense. I hated the sound they made, and instead of being therapy for me they became my own worse nightmare a living hell of NOISE. Amplified so loud my head hurt. I spoke to my neighbour and she said she could barely hear them, which shocked me, as to me they were like having army manoeuvres in the garden with tanks and guns it was so loud.
I really tried to keep going but in the end it felt as though my ears were going to bleed with the pain of their noise, and sadly my hubby moved them on for me, they went to one of his friends who had a huge house and garden and chickens, and they went on to live good lives but I felt I had failed them.
I took a break from fowl, I felt so depressed over it, and it did make me sink into a period of dark despair. What else was this disease going to take away from me. I still had my beloved Lucy dog who seemed to sense that noise was not what mummy needed and she never really barked and was very quiet and calm next to me. Now at this time even the television became a chore, my husband talking too loud, so many things would set me off, and I realised that I did in deed have an issue.
I spoke to my neurologist and he told me I was suffering from hypercusis, and the best way to deal with it was to slowly bring sound back into my life and set a level I could cope with. Over time I managed to achieve this, and as long as i wasn’t exposed for too long a level over that, I could cope.
Now back to animal therapy. In view of this in my mind I thought ok, so if i start with young chicken, a chick perhaps this will help me get used to their sounds on a lower volume, so we purchased a lovely selection of pure breeds, Poland, Dutch Bantams, Pekins chicks just a few days old. They were so tiny and sweet, I fell in love with them, and they slowly grew up strong and well and yes I did get used to their noise as it started low and my brain adjusted.
I become obsessed by chickens. My husband loved them too and I found looking after the chicks a new therapy. Being able to care for something that needed me totally. I had to get up, there was no denying that fact they don’t clean and feed themselves.
My house become a nursery. We had incubators in the spare room, and I bought special equipment for them to make sure they had the best chance of life. My kitchen island in the middle of the room had 2 large dog cages on top and many a chick was brought up in there. I know its like mad yeh! I started my own incubating business and helped others by hatching rare chicks. My success rate of survival was nearly always 100%.
I even had to become a chicken vet, and learn fast on how to deal with weak chicks and chicks in trouble. Its amazing what you can find on Google and youtube. It had gotten me out of a few sticky spots when dealing with hatching chicks, some hatch so quickly and others can take a day of anxiety and waiting. Like being in a maternity ward waiting for babies to be born. Watching chicks trying to hatch was an amazing experience, and seeing them when they had hatched slowly dry out and get stronger and stronger, and look for their mummy, for food. A chick fowl is one of the only birds which hatches and is totally self reliant. It soon learns how to drink and eat. Its truly amazing to see them.
The chick above in the egg was in dire straits, it was in breech position and could not tap its way out. The experts say leave them to die as they will be weak, but I couldn’t do that. I spent hours with this chick and slowly slowly peeled it out. This was a beautiful Buttercup fowl they are pretty rare and really I didn’t want to loose it. Below is an image of it all grown up. Yes it was a boy but being rare he got a good home with another breeder who needed new stock.
I know I did go silly, and it finally drained me so I had to cut back. BUT I loved it and really missed it when Mike died. I could never have done it without his help.
Even Lucy my Jack Russell got into it and would protect the chicks and even watched them in the incubator as she could hear them in their eggs chirping.
Life was just one round of cleaning and feeding but boy I felt good, yes tired exhausted but my mental health was great I could really cope with my illness at this time was still not diagnosed.
I actually felt useful again. Needed, I had to be the protector of so many little creatures. I loved them all, and to be honest hands on heart even the boys got homes. Mike would travel miles to take a cockerel to its new home. The image below is of Mike with his favorite Sid. Sid loved Mike he was a frizzle Poland. Such a character I mean how could you be depressed with him about he made us laugh he would follow Mike around the garden, come in the house and sit with him.
Having the chickens was great therapy for Mike too as he suffered with COPD and the chickens were helping him too. They all loved him. I would often find Mike asleep in the garden surrounded by young birds. They seemed to know he was safe. Mike never got fed up of them he really did love them all.
We even had broody mothers hens that decide they just have to be mothers and would sit for 21 days on eggs even if they were fertile or not. I would never allow that as it wasn’t in their best interests as they would get depleted and it can affect their health.
A broody hen is a force to be reckoned with. Having chickens sure made me realise just how human they really were, as they had traits which were very similar to us when it came to family.
They made great mums, had a huge desire to have offspring, and would protect them to the death. They would always feed their chicks before themselves. In the natural world they would spend hours unearthing tiny grubs, and would give each chick something to eat.
They would teach them how to survive I watched them for hours. Showing them how to bathe (in dirt), and even when the time came they would distance themselves from their brood and let them cope on their own, I even saw a hen show her chicks at 10 weeks to fly from the bench under a tree to the branches to stay safe.
When you witnessed these things, you were in awe of the experience. Watching them for even a short time, I would forget my illness, would just sit quietly and watch these mothers busy with their chicks.
Below is a frizzle Poland hen, these are not known to go broody but oh dear she had to have chicks. She made her nest very comfortable and had some lovely chicks and was fierce in her protection of them. I knew I had to handle her carefully as a peck off an angry mother is not welcome.
It was truly an amazing site and one I shall always remember. I felt privileged to be involved. The hens never attacked me they instinctively knew I was there to help them. All my mothers were well fed and when the chicks arrived I would supply really good quality food for them even scrambled eggs, and the chicks would grow strong and healthy. Too be honest over the years I had broodies I honestly don’t remember ever have a chick die.
Sadly when Mike died I had to make a lot of sacrifices. All my brooding equipment went to a friend, and I had to stop having my chickens. It was the saddest day for me when they all went to a new home. I knew it was the end of an era but I couldn’t cope with them on my own. I did go into depression, not only did I loose the love of my life, I had lost the link that kept me sane and active. Life would never be the same again.
I am now in sheltered accommodation and have my memories, but I believe all my chickens over the years slowed down my progression. Having a reason to get up and care for something was the best decision I ever made. Yes my beautiful garden went from green to desert as they stripped it but spending hours outside with them, was the best medicine I could have had. I do miss them terribly.
I still have my Lucy dog, and I still take her out everyday if its not raining on my scooter. I have my 2 cats but they are more independent and only want me when they see me for food.
If you are reading this with a chronic illness believe me when I say this, having something to care for, get up for is the best medicine ever. I know some will have children, but if you don’t, and your not working if you can find something even a hamster, because the rewards are amazing.
The rewards for me going through all those photographs, watching countless videos of the mums with their chicks still makes me feel good about myself. I know that period in my life was my life saver. And to some extent Mikes too.
I know my two daughters both had health issues and they have had horses from foals. Their horses have kept them going and active. Even my younger daughter was encouraged to ride to build up her core muscles. Their horses have kept them going without a doubt.
My eldest was bed ridden with M.E. After years of hard work and therapy she could finally ride again. So very proud of her, from totally bedridden for a long time, she worked hard and with the aid of her partner and her beautiful Spirit she started to ride again. To this day she is still riding and has her beloved Spirit. We agreed without him she would never be in the place she is right now, which is as a successful business women running her own cleaning business.
My youngest daughter sadly also has some bad health issues and the one thing that keeps her going is her love for Art and Crafts, and her beloved Star. Sadly at this time she isn’t well enough to ride, but still tends to her horse to keep her active. Without Star she would probably have been bed ridden.
Animals are amazing. Now they have become a huge part of our lives. They have been guiding people for years who have no sight, dogs were used in the war, as were horses, a lot of disabled people have trained assistant dogs. Dogs are now being used to detect cancer.
Even chickens have a place in therapy. I know of places where they are used for patients with dementia. The chickens give great pleasure to people.
I hope you have enjoyed my blog. Even writing it was therapeutic for me as i remembered so many things that I had done over the last few years, and having chickens enabled me to meet lots of lovely people who I would never have met had I not had them.
This is Ginger. A frazzled frizzle who should never have survived, but she did, and went on to lay eggs and is still alive today. I believe her age must be five now. A frazzled frizzle has been wrongly bred by mixing two frizzle genes male and female. Her feathers would literally twist off and break. At one point she had to wear her coat to protect her back from sunburn. She wore it with pride, and this is her modelling it.
My birds were all FREE RANGE happy birds, who gave a lot of joy to many who met them. They may be chickens, but they have brains, and instincts no difference to us. They have hierarchy, bosses, they trust us, and reward us with love and eggs. I mean how could you resist this cute face.
When you buy your eggs in future, spare a thought for the hen who laid the egg. She has been denied her rights to have a normal life, of foraging, bathing in dirt, becoming a mother, just so that we may have eggs on toast for breakfast. Only ever buy FREE RANGE.
Remember chickens are for life, not just for eggs.
N.B. Since I wrote this my daughter has painted this.
Basically she has shown through her painting how health issues cause you to loose confidence in yourself and your natural abilities and you have to constantly fight the evil warrior who is whispering in your head you CAN’T do this, and the Good Warrior is fighting against the evil warrior and saying yes you can FIGHT this.
She uses her painting to calm herself and cope with her chronic illness and sometimes through her paintings she can express how she actually feels with a very powerful image.
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 disease, Balo concentric sclerosis, Schilder’s diffuse sclerosis, and Marburg multiple sclerosis. There is debate on whether they are MS variants or different diseases. Multiple sclerosis behaves differently in children, taking more time to reach the progressive stage. 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.
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.
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.
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. 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……what 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.
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.
UPDATE 4TH OCTOBER 2020
Goodness so much has happened. I will update but if anyone is reading this blog, i have moved again, in august to a lovely bungalow bigger and better for my needs.
It was Mikes anniversary yesterday 3 years he left me. Its been a weird 3 years full of emotions and changes in my life but i am still trying to move forward.
My aim now is to try and focus on making at least one persons life better. If i can do that I will be happy so i will add more updates to let you know what i have been doing.
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.
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.
Pondering 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.
His 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.
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.
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.
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.
Finally, 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.
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.
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.
- Walking or moving around
If 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.
Remember 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.
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.
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.
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.
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.