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 


The Empty Chair

When grief comes knocking on our door the aftermath takes a very long time to get over.  Losing a loved one, means you have to contend with grief, and it can be very hard for some people to deal with.

The worse things to deal with are the anniversaries the holidays, and the constant reminder that the person has gone as there will be an empty chair, they used to occupy.

My husband used to sit in the conservatory on a black recliner rocker chair. When he died i couldn’t bear to look at it, and one day I swear I saw it rock, which freaked me out.

I gave it away, that empty chair was no more. It was gone, but sadly it didn’t fill the emptiness I feel everyday not having my beloved by me or near me to talk too.

The emptiness of grief is so hard to deal with. I feel forsaken, lost on a journey which I don’t want to be on.  My heart is aching when will grief the unwanted guest in my house finally leave me?

Sadly I know when grief does leave me, there will be another knock on a door for someone else and again it will be that unwanted visitor who doesn’t even wait to be invited in.

Every anniversary is the time to share our memories of the good times together. We can talk about them and show to people around us how much they meant to us. They are missed everyday and never forgotten. They are still with us in spirit and in our hearts.  Mike is always going to be my heart.

They need never leave our hearts or our minds, and we can take comfort in the fact that they would have been a large part of who we are now.

My lovely hubby Mike, a kind and caring man, a loving man, always there to help others no matter how ill he was or tired he was, never would he let a friend down. He was amazing very clever. A keen fisherman, loved steam trains, spitfires (more the engines), he was a keen C B radio enthusiast and his handle was TIMBERJACK.

He was a very talented driver and won many cups production car trailing and grass track racing, he worked years ago with motorbikes and would go off to Europe with his friend who raced them.  Mike was a brilliant engineer mechanical and electronics. He could fix any engine or car and always did a good job. A perfectionist.

An amazingly clever man sadly missed.

The many faces of mike.

Its 3rd October 2019 I cant believe it is his the 2nd Anniversary since he left me and his family and friends. I am still grieving everyday for him. Sad as when your together and your bitching at one another over silly things, or moaning about mess, or “where have you been” etc, it just isn’t important not really.  If you love someone just love them for who they are dont try to change them. Once they have gone no matter who it is, you will have to face that empty chair and then all the silly little niggles just seem so pointless.

I would love just once more to see oil stained hands on my front door where my Mike had been outside working on his car, and never thought to wipe his hands before coming back in, its all so well stupid now.

My tribute to my hubby I paid for a bench in his honour to be placed in the middle of our town so all his family and friends could still feel close to him. So many people knew him and loved him.

Remember just love your family and partners and cherish them because you just never know when it might all end.  Mikes memorial bench, my friend superimposed another photo of him onto it.  I can imagine him sitting there chatting to everyone, as he loved to chat. xxxxxxxxxx love you hubby.


I cried this morning………………

There was a knock on my door, when i got to answer it a nice man stood there with a bunch of flowers. My brain being slow didnt recognise him to start with and I just thought it was a flower delivery (racking brain who would send me flowers).

He looked at me and said, “I bought too many flowers for Easter and thought you would like a bunch”. It was then I realised it was one of my neighbours a few doors down, who I am kind of just on speaking terms, hello etc.

He gave them to me and I CRIED THIS MORNING as I took hold of the flowers tears flowed from my eyes, I have never felt such comfort and caring, and realised that there are lots of good people about in this world.

He bought me flowers at the time I was sitting alone, thinking of another holiday without my husband or my mum. He bought me flowers without realising just how happy they made me feel. 

What a wonderful family to think of me on this occasion.

I cried and he looked at me and smiled and went off, his mission to cheer me up complete. THANK you to a truly wonderful family who made a sick old women happy even for a bit.


The Secrets behind the cupboard door……….

How many of you have that cupboard in your home where you just kind of shove things in there when you have no where else to put it or its an unwanted gift you want to hide? Over time it gets fuller and fuller until its ready to spill its contents out onto the floor…..

It reminded me of the episode of “Friends” when Chandler found Monica’s secret cupboard.

So funny but we all have one don’t we.

Well finally for the first time in ages I was actually having a good day.

My care worker Jade and I finally decided to tackle my secret cupboard the one under the stairs located in the downstairs toilet.

Ugh it was full of cobwebs and boxes of goodness knows what, we could see plastic bags full of stuff everything looked sad and neglected as they were no use to anyone anymore, they were just hidden away out of sight out of mind.

We had a lot of fun finding things i had forgotten. Now I have 3 large boxes full of car boot stuff to be taken to be sold and a real feeling of accomplishment.

Now all my hidden junk I didn’t want anymore would be able to have new life, and new families who could enjoy them, the saucepans, frying pans, spatulas, kettle, camping gear, wine making paraphernalia, (worth a bundle), car radios, cassette players, lots of lovely Christmas decorations, saucepan rack and much more, would all find new homes ……………………………..

I even found 3 very large bottles of my best wine I used to make Beetroot bottled in 2011 it was the last batch I made. Boy its going to be strong and blow someones head off lol. Beetroot wine becomes fortified with age, like a really strong sherry.

Anyone fancy a bottle lol it comes with a warning that is for sure.

For me sitting there on my electric wheelchair helping Jade sort out all this stuff was a huge ACHIEVEMENT for me, I felt great just doing that one small task. If you don’t have MS or a chronic disability you cant comprehend how these little achievements can make us feel.

Now I have a clean empty cupboard………no spiders and items who will have new lives and give others lots of pleasure……

I wonder who will have the camping stuff and where the little kettle and frying pan will end up…..maybe France, or somewhere nice in England with a nice young couple starting their new journey. I hope their journey is a good one full of love and joy.

Even with all the pain I have had my journey has been a good one even though I lost the love of my life, I know he will always journey with me wherever I go.

Have a wonderful Easter all of you reading this 2018.

Remember maybe you too can find some hidden memories in your secret cupboard.



When Mobility Aids go Bad

28946326_10155680669978918_970538035_oFor me it was actually a good morning, I had a great nights sleep not too much pain and only woke up once took my med’s and fell back to sleep again bliss. You are not blessed with many nights like that with MS.

I nearly always wake up between 4am and 5am every morning. I like to wind down and have my coffee which I make without getting out of bed as I have my flask ready by the side of my bed. Ah bliss, the aroma of strong Nescafe wafting towards me, is like to me a whiff of fresh air.  That first gulp of hot coffee sliding down the throat is just the best feeling ever.  Who needs fags. Whilst I was waking up I would peruse the Internet, answers any messages, and check on my group which I ran for support with chickens, listen to music and just well chill out.

So well I get up at 7am, its always a struggle for me to get up as my legs have ceased up like some old engine which needs more than a tin or two of WD40 to get it cranked up and moving.   Ah well my hubby would help me when it was particularly bad, but now he had gone, I had to just well get on with it.   Bit by bit, legs out, body out, rest pause until I finally could stand up.   Some mornings, I could swing my legs out and hold onto my commode chair and almost stand up straight with little effort but those days were fast receding.   However, this particular morning it was good, I could get up yayyyyyy.

Routine is manage to get downstairs carefully with dog in tow I would hold onto the double banisters either side of the stairs, and 2 cats following.  My walker was ready by the bottom of the stairs and my electric wheelchair parked by the wall it was going to be a tri-fold walker morning, I could use my legs to get about not hard wheels of my chair bliss and I was moving well enough to walk and hold onto my grab rails. I hated using the electric wheelchair and tried my best not too I have always been determined to keep on my feet.

I let the dog out for her morning constitutional then it was feeding time for the animals. The cats well they always seemed to have food, but hey you have to pretend to put more or their dishes otherwise they think they are starving.

Whilst they were eating, i would perch my bottom of my perching chair and get washed and dressed.  I always keep my morning clothes ready to change downstairs its easier. If I am having a really bad day, sadly I would just slip a jumper over my PJ tops, and add some new underwear and trousers sorry but needs must and let’s face it who would know or care. Trying to take off a PJ top when you have little energy or arm and shoulder is in agony is simply not an option.

Wash quickly and it would be about 7.30am by then. I have some chickens little bantams which my husband and I kept. They are the reason I am still on my legs.   Sadly when I lost my husband half had to go, and 3 more are leaving me next week so I will only have a few little ones left  ginger (4)

The picture is of Ginger my frazzled frizzle. I had her as a chick, the breeder made a fundamental mistake by breeding two frizzle chickens together which causes twisting feathers and brittle feathers. She would wear her coat to keep warm in the winter.

The “GIRLS” always rush out when I let them out, they squabble, and squawk and moan at me for being late, then devour everything in sight, poop, preen, drink their water then they are off out of the pop hole into their garden if the morning is good. It was good this morning so they scrambled over each other to get out.   The coop is easily cleaned and later my care worker or my grandson would give them a tidy.

Then it was my turn. I was feeling so good that morning, my legs were surprisingly loose not with the usual spasms and cramp just twinges, my music was on, a sixties tape which I loved.  I really felt well GOOD.

It was such a rare feeling it made it all the more special for me.  There I was getting my fruit and toast ready, chatting and singing to the dog who looked at me as though I had gone mad, perhaps I had.  I don’t know about you but I am always talking to my animals.

It was such a lovely day the sun was out I found myself saying to Lucy my JR “I think I will take you for a longer walk today maybe we might even go into town what do you think girl?”  She would look at me with a twist to her face as though she was listening boy one day I will get a real shock if she ever answers me. It was a Wednesday 21st March 2018 and I had no visitors or care worker on a Wednesday so I had to fill my day some how as it had become hard for me to be one my own, so a walk out would do us both good.

So we got ready, it was nearly 9am by then, I was watered, fed, tablets taken, all was good in the world.

I grabbed my coat and Lucy’s harness and we were off to the out shed which was located and attached to the house by the back kitchen door and side alley way which made the house known as an end of terrace property as we could get to the back through a side door.

It was a big shed which my hubby used to use to dump all his engine bits in. It had double patio doors. When I lost him I had it cleared out, and made into my scooter garage, with a ramp leading from the patio doors, it was easier for me as all I had to do was just open the double doors and put the scooter on walk and move it slowly up the ramp and out.

This morning was no different. I grabbed my walking stick, slipped my slip on canvas shoes on  my feet, secured the house, put the scooter key in the ignition and turned the dial to low and started to move it slowly up the ramp after having opened the doors.

Suddenly with no warning whatsoever it came alive I swear it did. “Fanciful” no truth. It turned into a MONSTER.  Not an MS one but a MonSter.



Without warning suddenly the tiller where the steering is wrenched itself round towards the left lifting the front up off the ramp and I lost my grasp on it, and how I have no idea I ended up the other side of the ramp with this thing kind of turning its steering to the left,

Lucy had gotten out of the way thank god, and I managed to grab hold of it again, and then without warning, it twisted itself towards the right and proceeded to come down the small area of ramp with me trying to hold onto a machine that had suddenly turned into a bucking bronco. I swear it did, like an idiot I was trying to hold on to it as it was trying to shake me off. I was just been shook about and before I knew it my whole left foot had been run over as the under carriage of the scooter dropped back down on my foot.

My scooter had become a mad bucking bronco I swear.  bucking-horse_thumb

I was sent backwards and finally it hit the shed door to my house really hard and stopped.

Adrenalin kicks in I was just so shocked and frightened, Lucy was cowering in the corner away from the mayhem thank god.   I dont know where I got the energy from but crying I just got back through to the kitchen I had my careline round my neck but my mobile phone was handy too, so I rang my daughter who lived a few minutes from her, and must have sounded pretty panicked as I found out later she RAN to my house omg if you knew her, you would realise how daft that sounded.

My first aid training kicking in, I some how grabbed a bag of rice from the freezer with some veg in it and got to the sitting room, and elevated my leg and foot and on the way I had some how grabbed my bottle of ginger beer and drank for the sugar. I was in so much pain my foot was starting to swell, Lucy was crying and whimpering as she knew I was hurt.  I was just in shock by then and really don’t remember much, just vague.

My daughter came, got hold of my other daughter, and my son in law came, and he took me to the hospital.  I was just so lucky as nothing was broken.

My very good morning, had turned into a total nightmare. The mobility aid that was supposed to support me had turned on me in a viscous attack, that is all I can say, it felt like it was out to get me.  When my daughter tried to move it backwards away from the door, it did similar and she struggled to hold it steady.

When life had calmed down again, and I was recovering my grandson showed me the big shed door the scooter had actually bent the hinges this door had been there about sixty years and it would not close now so shows how hard that scooter hit it.

It would appear that the steering had broken or something I have no idea the technicalities of it. All I know is for weeks maybe even months I had been saying that my machine was steering towards the right, I had ended up in next doors hedge a few times.

The moral of this story is twofold. 

If you rely on one of these machines, make sure you have it serviced regularly.  Dont leave it to chance. It might just be a mobility scooter but it CARRIES YOU…..and it should be pavement or roadworthy as they are heavy and dangerous. They can turn on us and cause us injury.

Two make sure you have liability insurance and insurance on your machine, as if mine had gone nuts when I was out in town where pedestrians were I could have hurt someone.

Yes I was hurt but I also was given a serious lesson, if you rely on it make sure you care for it, just like you would a car.

Sadly the end to the story is Chucky is going to be turned into a go kart and I have a new scooter and believe me, it will be checked regularly, and I have an insurance for it now. It will start new but be well cared for.  Chucky was second hand when I got him, and that was six years ago and he was never really cared for.  I relied on him to keep me safe, and get me out, but I let him down by neglecting him.

NEVER NEGLECT YOUR MOBILITY AIDS.   You need them to stay safe.

A reliable friend for six years who kept me sane, took me out so I could enjoy some life, always started first time even in the freezing cold, sadly now gone.  I shall miss him as he has been a big part of my life. Always there when I needed him.




'Sad endings always make me cry.'