Please help get a little independence and normality back in my Life, home and family.

Hello I’m Karen ( please don’t judge me on my name ). Yes at times I’m outspoken but I am understanding and excepting, if I can help I do and family mean everything to me. I have loved seeing our daughters growing into the women they are, the lives they have made and the partners and grandchildren I have gained are wonderful , I have always told them to tread there own path and they have. They make me proud.

I’m 56 now and since November 2020 I’ve become wheelchair dependant. It was sudden and unexpected so I’m still trying to adjust and I admit I feel sorry for myself at times. It was an operation that didn’t go to plan that sent me down a path in life that should not have happened for many more years. My head tells me to stand and walk, it doesn’t feel real until I try and then each time the reality crashes in and I feel deflated, thinking of all the things I can’t do anymore instead of planning ahead it makes me dwell on the unfairness of what’s happened.

BEFORE I WAS DIAGNOSED. I married my best pal.

We fell for one another because we made each other laugh. Like most couples we didn’t have a lot but we had fun. I could see us growing old together, still being daft together and holding hands when we go for walks, no matter how old we were. But life changed and made sure that won’t ever happen.

You see I have a muscle wasting condition called muscular dystrophy. The exact name of mine is LGMDT2D, you can look it up on the muscular dystrophy uk website. . I was diagnosed at the age of 30. Until then there was no sign of what was waiting for me. I used to eat well and exercise, my favourite thing was a workout with weights. I was a typical 80s girl, I loved dancing and socialising and I’m sure at times gave my parents worry 😂.

But around the age of 28 I found the strength going in my legs, nothing big just not able to run so much or bend easily to pick things up from the floor, my legs hurt even when I did nothing.

The doctors put it down to having children and said it would improve. Two and a half years later after having my last daughter and moving house and my family being concerned about my deterioration I went to our new doctors. The doctor was kind and had me do some movements and standing exercises and advised blood tests. Within days I had a call from the surgery asking me very nicely if I could pop down to see our doctor…. At the appointment I was told I had MD, WHATS THAT I SAID. Thinking it was something and nothing. Over the years I have found it’s not something and nothing. I understood the basics and had to except that one day I would probably need a wheelchair but not until old age. It’s a complicated disease , it’s random and horrible, it effects every person differently and at different rates of progression. I for instance have three older brothers and the eldest two are completely unaffected while myself and my next brother are both effected, although he’s older than me he’s still fairly mobile which is fantastic.

That’s the four of us kids, Steve and me at the front, then this is Steve now. It’s hard understanding why only two of us are affected, but on the better side we share are thoughts, worries and laughter. It’s crap that we have muscular dystrophy but I’m glad at least it’s not all four of us.

It’s hard telling your mum that you have a genetic muscle wasting disease. Like I said it’s random, mum and dad had no signs or symptoms at all, but I know at times mum worries and blames herself. It’s horrible thinking your mum carries that feeling with her, she’s our mum and I know she would take it away if she could. Dad passed away in 1987 so thankfully he never knew, he was a great dad and left us too soon.

Mum and Dad on there wedding day xx

The muscle wasting slows me down, I’ve found as each year passes I can do less but it has always been slow so gave me and my family time to adjust , from a walking with a stick when shopping to a scooter on longer trips, learning how to move differently and using a riser chair to make things easier. Things like stony pathways became a no go and having to get a litter picker to retrieve things I dropped, filling the kettle less full because it was unsafe if it was too heavy. Then there was the flat shoe situation, this I hated because I love shoes especially high ones. I adapted to keep going. Our youngest girls got bullied at school by other children which wasn’t right at all ( why is your mum weird ? She looks funny coz she doesn’t walk properly.). That’s hard to deal with when your children suffer because your different. But they have grown into thoughtful, kind and strong women

It doesn’t do to harp on the past. We had a pretty normal life with a few adaptions so I am grateful I got to raise such great children in a loving family and made some happy and precious memories.

THIS IS ME AGE 50 on a family holiday.

As years got on things changed, we all get older and we like many others lost people we loved, we had our tanagers to keep life exciting and things were a slow progression of pain and muscle loss. But I could still do some of the things that meant a lot to me. My favourite thing to do was baking, put the music on and loose myself in the kitchen. I love being outside as well, my grandparents were farmers and horse grooms so it’s in my nature to find a peaceful spot and just enjoy the fresh air.

I have a check up every one or two years at the Newcastle genetics centre. It was there that I got my full diagnosis and I’m forever grateful to them for their help over the years.

In 2014 I was in terrible pain and had been taking a huge amount of medication to try to help but it was thought a new hip was needed, I have now been told I have osteoarthritis as well, so with caution, lots of preparation and determination on 04/04/2014 I had a complete new hip. Four hours after the operation I got out of bed and walked to the loo, I knew how vital it was to keep my leg muscles active. It took about 12 months to get back to walking with just a stick, unfortunately the difference in leg length made it hard to get my balance right for a very long time but once again I adapted, the annoying thing was all my jeans had one leg with a frayed hem and the other fine so it looked awful.

During that year I also damaged my shoulder, believe it or not I was just pulling the duvet over me in bed WOW The PAIN was unbelievable, I thought I had broken it, turns out I had torn several ligaments. Again when your muscles get week other things take the strain and aren’t always strong enough. So I used to go for injections every few months and for a few years it worked well, my arm wasn’t as useful but the pain was less so I could carry on with normal life ( well normal life for me anyway ).

Next was an accident with my right leg, It twisted and tore several tendons and ligaments. I as usual refused to go to hospital despite being unable to put my leg to the floor, so I bandaged it tightly and let the bruising spread from ankle to knees and rested until I could walk a little again. I had had spent too much time in hospitals already so didn’t intend spending any more.

After a few years the pain got worse and it was decided I should have an operation, not just an operation. A total reverse left shoulder, because again the lack of muscle and osteoarthritis has worked together against me. It was painful day and night so I said let’s get this done. My husband and I went on holiday to get a break before the operation, to spend some time together and get ready for what we knew would be a big and difficult operation with a long recovery time.

It was while on this holiday I found THE LUMP. I kept quiet for a few weeks and made myself think it was nothing to worry about. But I knew my shoulder surgery was coming closer so decided to get a check. OH FOR GOODNESS SAKE. NOT SOMETHING ELSE WRONG. WHY ME. The thoughts going through my head as I was told it was breast cancer. Haven’t I had enough bad things happen. I’ve got a fight on my hands now because I’ve got a family and life that’s worth fighting for. I saw doctors, had biopsies and got a treatment plan I ready before I told our daughters and their husbands. It was and still is the hardest thing I’ve done, to tell your children that you have cancer is like telling them you are going to die ( but I was not, no way, no how ).

I had both breasts off on the 17th November the day before my husbands 50th birthday. No celebration, no meal, no hugs. Why . ? Because I was in critical care, the blood vessels on the right side hadn’t healed and I was rushed back into surgery the night of the operation, then to critical care. My husband was called in to the hospital because I was so ill and spent his birthday expecting the worse.

My side after getting out of critical care.

A few days in critical care and then on to a ward. Drain pipes sewn into the side of my chest, stitches across my chest and having to be careful not to push up on my arms, but I did it. After a few more days I went home, I was desperate to get home to my husband and family because I knew that was where I would recover best. I healed well and before I knew it I was retuning to being me, obviously I had to go for an appointment to get my results and FANTASTIC NEWS, the operation was a success, the cancer all gone and no follow up treatment. How lucky am I to have been able to say that it’s gone after one operation. Yes I have scars instead of boobs

, I look a funny shape, but I’m alive and at that point doing well. I was offered prosthetic boobs and special bras but for me it’s more hassle and I’m ok with how I am. YES AT THAT POINT I FELT LUCKY AND RELIEVED.

Home from hospital. One month on. Then

CANCER FREE ON HOLIDAY. Making memories.

As soon as was possible the next step was to get my shoulder repaired, I was warned it was a complicated procedure and I would need to recoup rate properly. So one again I head for surgery and yes once again it lands on my husbands birthday. So into hospital. Very scared indeed after the last operation, but all was ok. I had my operation and stayed overnight. Yet again I needed to get home, it’s the best place for me especially now only having the use of one arm for a while. So when the physio team came somehow with a walking frame to balance I showed them I was ok to go home so they let me go despite it only being 24 hours after surgery

. I recovered well, there were challenges and tears but my pain subsided and the operation healed well so again a good result despite having a little less movement. At this point the dreaded COVID happened and my shoulder physio was unavailable . Because I’m a clinically vulnerable person extra precautions were taken.

So like the whole world things changed for me and my family. We survived and were careful.

As COVID restrictions were eased it was time one again to see about my damaged knee, by now I was wearing a rigid brace because their was a real danger of it collapsing, it had been getting worse over the last few years and now causing me terrible pain with swelling it was definitely time to get it sorted. I had all the usual tests and saw a surgeon. To my horror I was told the knee was so bad there was only a hinged complete knee replacement available. The time for any other options were long gone, not only that but no single surgeon would undertake the operation I desperately needed because of the way I move my leg. I was told I would work the new knee loose and possible cause even more complications so the best option was to carry on suffering. I left the surgeons office in tears of frustration. You see with me having muscular dystrophy it’s imperative I keep moving, otherwise my muscles just loose strength and I’m finished walking. So for me this meant I had to just keep going, keep walking and put up with the immense pain it caused.

MAY 2019. Still keeping on going and enjoying a christening .

NOW THE LAST CHAPTER. THE WORST CHAPTER. THE REASON IVE WRITTEN ALL THIS DOWN.

I’m not brave or courageous, I’ve had things to overcome. I’ve had people say how great I am and they don’t know how I do it. The truth is I’ve had no choice, I won’t give up and let my family down. I love my husband and my family and they deserve better than a quitter.

I’ve been through everything and was determined to keep trying so I asked for a second opinion on the damage to my knee, again tests including an X Ray. During the consultation on my knee I mentioned that the hip replacement I had in 2014 had become painful and clunked and would grind. So I was sent for x rays on my left hip again. The X-ray showed my left hip was in a terrible state ( I knew that from the pain and the noises it made when walking ) it showed it had deteriorated and was semi dislocating as I walked. So now I had a terrible reality yet again. My knee would have to wait as the hip replacement was urgent and needed revision at the earliest possible point. Here we go again. Surgery, again, in November again, I will miss my husbands birthday completely, because of COVID restrictions I couldn’t have visitors. On 16th Nov 2020 with COVID restrictions I went to hospital at 6.30am to book in for a hip revision.

IT WAS THE LAST TIME I WALKED

This is the last picture I have of me still standing and walking. It was taken as I came back into the house by the doorbell. October 2020. I didn’t know then that this next operation would take all the hopes and plans I had.

To move to a bungalow that helped me as I slowed down.

To have a few more holidays with phill now there was just us.

To go for a lunchtime bite to eat every now and then.

Bake, plant flowers spend time with the grandchildren.

Mostly to make the most of the next 10 to 15 years before my muscles got too weak.

As I type this the keyboard is getting blurred because of tears rolling from my eyes, my chest hurts with the effort of trying to stop being week all those plans have changed. but I will wipe my face and I will tell the rest of the events.

I was taken to the ward and met the surgeon for the first time, I had spoken on the telephone to him and explained all about my muscular dystrophy and that it is vital I keep moving and get up as soon as possible because of muscle waist. I also told him how quickly I normally recover. So later that day I was taken down to theatre.

Everyone was nice and before long I was asleep, unbeknown to me at this point it took another two hours to get the other cannulas in and surgery was being held up. I woke later that day feeling a little groggy covered in bruises on my hands, arms and feet. but I wasn’t worried. I had a catheter which was something I hadn’t had before so I suppose there was some expectation of bed rest despite all the warnings about wasting muscles I had told staff. The night was ok and apart from being tired and week I was expecting to get on with physio and get home. The doctors and surgeons seemed very happy with the way things had gone, now the next bit is muddled in my mind, I can’t remember if I was in need of a blood transfusion first or if the physiotherapist came first. All I do know is things got bad. I remember having to have more cannulas put in by an anaesthetist, my veins were all collapsing, . I was like a battered pin cushion. Then the physio wanted to start the exercises and again the exact chain of events is confusing. I did sit on the bed with help and I was brought different types of standing frames, non of them much good because I couldn’t pull up on them to stand. So the bed was raised and I did try to stand, to be fair I was on my feet but my knees were bent and I was leaning forward clutching a frame, I tried to push into my normal upright position and it didn’t feel at all right, I made several attempts but then got tired. It was decided that was enough for now and time to rest. So with help the physios started to put me back in bed, there was a strange uncomfortable POP in my hip and my foot was pointing sideways. It felt horrible and I told everyone to stop because it didn’t feel right.

THAT WAS THE FIRST DISLOCATION. THE FIRST OF HUNDREDS THROUGHOUT THE NEXT FEW MONTHS.

The physio called for the ward doctors and he manipulated it back. I was told to lay completely still, indeed I found that the slightest move with my left leg would pop it out so there I lay. Several doctors visited me and I remember being told that I would be on bed rest for at least six weeks, the tears ran down my cheeks, I was angry and upset so the doctor got all my anger and frustration thrown at him. How could it go so wrongly after me explaining how my muscular dystrophy would waste my muscles terribly if I didn’t use them, here I was through no fault of my own being told that the worst had happened.

Yes I’m smiling in every picture. Why you ask, well no one wants to see a miserable face and listen to a constant sob story. It’s better to be positive, admitted I can’t all the time but when the camera is pointed at me I will always smile.

The next thing was to be fitted with a brace, then another brace even more solid, this was used to strap me up so the nurses could wash me or put me on a bed pan. Every meal time I ended up with food down me and it took a minimum of four members of staff to put me in the brace and roll me from side to side. My hip still popped out most days. I had ok days because the staff was so lovely and tried hard to make life easier. Each day there was some form of physio but not the standing I needed. By day 12 I was so fed up, my hair was dirty and I felt awful, I missed my husband and family I’d had a few quiet tears to myself. Eventually I got to a point where I could try sitting for a time but again the hip popped out so again it was mostly bed rest and all the time laying thinking about how this endorse bed rest was ruining my chances of my old life back. By the beginning of week three most nurses were trained how to fit the brace and I was being rolled with two staff, I was now in a position to ask about home, I needed home, I couldn’t face six weeks over Xmas in hospital.

IM SO HAPPY TO BE SITTING UP AND BELIEVING THINGS WERNT SO BAD. THEN FINALY HOME DESPITE IT BEING BED REST.

So plans started to be put in place to get me home. Wheeled commodes, a hospital bed with an air flow mattress because I would still be bed bound, slide sheets, banana boards. It all landed in the living room back home. A care package of two Carter’s five times every 24 hours. So After tears, tantrums, swearing apologies and being told why I had to wait so long to get the problem fixed and why there was a problem at all I was sent home in an ambulance on a stretcher still unable to move without dislocation ( by now I had got the knack of popping it back in if it popped out ). But avoidance was the better option.

At home after three days I dismissed the Carter’s, they were very nice but every visit was a new team of two people, they had no idea of how to help me without dislocation of my hip and for me the stress and COVID risk was too much, so phill and I managed, it took hours to get me sorted each day with washing, toileting ( luckily we had a downstairs wet room ) cooking, cleaning. It was exceptionally tuff. Me sleeping in the living room was a nightmare. But Phill did it all. All the time we both worried about the future and how this would all end.

Christmas was strange, not only was it the first day I wore clothes for weeks but like everyone els we had just one family day to catch up and see one another. We had a nice day all things considered and after Christmas we were looking forward to moving to a bungalow. That in itself was worrying because despite it being a bungalow we now had me bed bound so the move and how we would manage was on our minds.

12th Feb 2021. We moved I’m now able to sit a little longer in a wheelchair. My hip just pops out when it likes but I’m no longer scared of it happening. So the move went ahead with our children pitching in and making sure we got sorted. The hospital bed went back because there was no room for it and a whole new set of obstacles are now stopping us just live our lives.

Doors that are too narrow. So I bash into the door frames and cause damage. Believe me I get angry.

The bathroom I can’t get in on my wheelchair so I have to be put on a wheeled commode in the other room and wheeled through the hallway to get in the bathroom. Not dignified at all.

The shower cubicle that’s 9inches off the floor so my husband has to lift me in and out of it, placing me on a toilet chair that’s in the cubicle.

The bedroom is too small to get my power chair round. I can’t get to my wardrobe, my side of the bed ( again I’m wheeled to bed on the commode ).

From my wheelchair it’s impossible to do the cooking because the footplate hits the sides, so no baking.

the steps at front and back stopping me getting my power chair out. To leave the house my husband made a wooden ramp that has now collapsed under the weight of my power chair. To go in the car I’m taken out backwards to the car at the side of the road where everyone can se, there I’m lifted by my husband and shuffled / plonked into the car, my legs are moved in afterwards.

I’ve had yet another revision hip replacement and thank goodness it no longer dislocates. I had the last hip surgery on 1st March 2021. A short four day stay with once again attempts at physio trying to stand me, yes it was unsuccessful again. But I went home after a few days. In a wheelchair and that’s where I now stay. I can no longer stand or walk. I go for physio at the muscle support centre in Coventry and they are fantastic.

But in my heart of hearts I know I won’t ever get my life back. If I think about it too much it upsets me so I distract myself with as many other thoughts as possible.

HERES ME NOW. UNABLE TO STAND UNLESS STRAPPED TO A TILT TABLE OR SITTING IN MY WHEELCHAIR WITH A BAND HOLDING MY LEGS TO STOP THEM FLOPPING.

Over the years I’ve learnt to except the slow progression of weakness, it’s hurt at times when I admit to myself that I’ve never picked up my grandchildren or been able to chase them in a game, My grandchildren all learnt to climb onto my lap and hug me. , I couldn’t walk long distances and climb stairs, but I had my stairlift . Now I just sit, I can’t do anything without help, some because of the operation going wrong but also because our home is not wheelchair friendly.

SO NOW. I need a wet room so I can shower independently, with a loo I can use without being dragged on a commode through the house and over the loo.

I need space in my own bedroom with a bed that will raise and lower so I can slide from bed to wheelchair or commode instead of being physically lifted and dumped in and out of places.

clothes in draws I can reach,

a side in the kitchen that my wheelchair slots under so I can make a sandwich .

A wall mounted ironing board and mini iron so I can do that.

Yes a fully slabbed garden a wide front door with a ramp.

In time I will need ceiling hoists and breathing apparatus ,but not yet.

I could list much more but these things would change our lives so much. Right now I have to rely on my husband and people who care to wash me, dress me, get my clothes for me because the bedrooms to small and I can’t reach things. I’m a private person so this I find depressing and intrusive. My husband washes and drys my hair, does the washing, ,cooking and cleaning. If I had a wheelchair friendly bedroom and wet room our lives would be so much easier. I could do morefor myself with the correct things in the right places to help and not hinder.

My husband could be more husband than nurse.

I wouldn’t be that useless fat lump of burden I now believe I am. These simple things would help me live, to have my own space and the privacy I desperately miss at times. I would feel more human and less useless. Right now I’m trying to make all this understood by an OT. But I feel it’s falling on deaf ears. I’m in this wheelchair years before I should be, I’ve put on vast amounts of weight because I don’t move, my legs are swollen and blotchy and I rely totally on others to keep me clean fed and safe.

I live this life every hour of every day, there’s no respite. I have done everything possible to help myself but I haven’t succeeded. I need special assistance and an adapted home to help me help myself. My life is complicated, I know that and it’s going to take more than most people need to make it any better.

It’s not been fair. I’ve fought my whole adult life to keep going, I’ve excepted and overcome many things, I’m strong willed and determined but this has broken my spirit. I can’t see a holiday in the future because I’m so disabled and need so much equipment, I won’t go far from home now, I can’t in case I need the loo and there’s inadequate disabled facilities, I don’t like people seeing me now, the way I’ve ended up, how I look how people look at me. The difficulty of being lifted into the car and people seeing, the weakness in my arms has got worse because I do nothing. So dropping food down myself is embarrassing. The feeling that I’m too demanding and a nuisance each time I can’t reach things. My husband and family have enough to contend with they don’t deserve having to nurse my needs and wishes too.

A day out in July 2020 with some of my family. Happier times.

So this is me. Age 56, still a fighter. My right knee is still unstable and painful at times, my right hip is also painful. No I don’t and can’t do things that others my age and much older can but….. I was given this life because I’m strong enough to deal with it…. I’ve been dealt a bad hand at times but this last one is a daily battle, I cannot except not being able to stand and walk, my head says just do it but my body no longer has the strength. If I can get the home adaptions the right ones that work with me not against me I will live a good happy and useful life still, I will be able to greet visitors with a sense of happiness and not feeling inadequate.. I know what’s ahead of me and I will deal with it. As long as I have the love of my family and a little help with making adaptions that will turn my home from a prison to a place I love again. Despite all the bad thoughts I believe I have a good life ahead and I just need to battle ahead to achieve it and the happiness that goes along with it.