Disability

Star, Five Years Ago

June 11, 2019 by Anne Sweet 6 Comments

This time five years ago I was sitting on a hospital ward with Graham waiting to hear news of Star who was in the operating theatre.

This was the beginning of the end of an eighteen month journey which started when Star woke up one morning with a wonky neck. We took her to the GP who told us she had tonsillitis. I knew he was wrong though, so I took her to A&E. They said she had a torticollis and would be fine in 48 hours. She wasn’t, she got worse. Sometimes as a parent you have to tune into your instincts, even when the Dr’s turn you away, you have to persist if you feel something is wrong.

Three more trips to A&E and eventually they listened to me and did a scan. She was admitted immediately. One of the discs at the top her spine had twisted out of place. She was give a bed and some muscle relaxants, when they didn’t work we were told they were trying to find a traction bed. We were allowed home for the weekend with Star in a neck collar. When we arrived back on Monday morning the traction bed had been found and it looked like some kind of Victorian torture contraption. Thankfully they decided against using it and Star was sent home again.

Sadly, it didn’t stop there though because they started small and worked their way up with treatments. Physio made her worse, medication made her worse and eventually she was taken to theatre for a manipulation to put the bones back into place. She came out of theatre in a halo, which is not as nice as it sounds. A metal ring is screwed into the skull and it has four long poles which are attached to a plastic vest. It cannot be removed unless by a surgeon.

It was horrific, but after a few months we were quite used to it. My little Star was just eight years old at the time.

She even had to wear it in bed.

It Didn’t Work

As soon as the halo was removed in march 2014, it was obvious that it hadn’t worked. Star’s neck flopped back into it’s former abnormal position and she was back wearing a collar. We were so down about it, but Star took everything in her stride.

Then we heard that she would have to be fixed with screws and titanium plates, it was the only option. This involved two operations, the first was on 9th June 2014 where they manipulated her again and replaced the halo. Then two days later they took her for her plates and pins. The bone had deteriorated so much they had to do a bone transplant from her skull. The operations took hours and all we could was wait and pray that she would be okay. While staying in hospital we had been witnesses to two child deaths on the ward. It really is a horrible situation to be in and I wouldn’t wish it on anyone.

Star was back on the ward at 7pm, half her head shaved and the halo in place for another three months.

A Life Time Ago

In one sense it feels like it was a life time ago, so much has happened since then and my little girl has grown into a young woman of almost fourteen years. In another sense I can remember everything about that time like it happened yesterday. It is difficult to even begin to imagine the emotions you go through while waiting for your child to be returned. And the hospital was like a second home, we didn’t go to outpatients for appointments, we just went straight to the ward. We knew everyone, and everyone knew Star.

Now my girl barely remembers it all now, well apart from the nice thing like the toy room on the ward. She remembers her home tutor that she had for a whole year while recovering, and not having to go to school. Surprisingly has forgotten about the halo she wore twice. She even forgot about her scars, well she can’t see the one on the back of her neck or head. She has noticed the ones on her forehead but they are disappearing well.

The Future for Star

During all this time it was discovered that Star had a connective tissue disorder and she was eventually diagnosed with Elhers Danlos Syndrome. Since then she has been seen by a geneticist who believes she may have a different connective tissue disorder and is convinced she has Marfan Syndrome. There are more tests to be done because the test for Marfan Syndrome involves the febrillin gene and Star doesn’t have that. But, there are 3000 different mutations of the gene so her DNA is being tested again. She is also having her chromosomes tested as the geneticist thinks there may be a connection between her physical disabilities and her autism.

In the meantime, Star is working hard at school and will be doing her GCSE’s next year. She gets a lot of help and support and the school, although mainstream, are very understanding. I do have hopes that her future will be fine so long as she gets the extra help after leaving school.

I worry so much about my children, especially now that I am sick. While Star was ill I was running around like crazy, taking the other two to school and nursery and the older kids to college. Taking Star to her appointments at the hospital, or even taking it in turns to stay with her overnight. I was fit and able to deal with getting up several times every night. I managed that, but if any of my children needed me like that now I would not be as much help.

It’s hard to imagine how different life was five years ago, but that day changed everything and most probably saved my daughter’s life.

June Prompts, Repeating, Wondering, Turning, Getting, Desiring

June 3, 2019 by Anne Sweet 16 Comments

I’m going to try and use this month’s prompts from Sheryl at A Chronic Voice, to express myself. I often gloss over a lot of the effects of my illness, in particular after I was accused of moaning too much. I’ll explain more as we go along.

Repeating

I use an app on my phone which prompts me to say how I feel throughout the day. It’s called Daylio and you can set it to reflect the things that affect your life. I find myself repeating things over and over and my most common moods and feelings are ‘overwhelmed’, ‘stressed’ and ‘pain.’ It pops up, and I click to let it know how I’m feeling, a constant reminder to let me know just how awful it all is. The idea was to keep a record so I could be more honest when I visit the consultant, it’s easy to gloss over the awful.

However, always the optimist, I tried to inject some positivity to my days. I added a daily prompt to think of something I’m grateful for. There is always something, whether it’s just a nice cup of coffee made by my daughter, or a gift in the post that I wasn’t expecting. It has made a difference to my monthly chart by this little repeating high each day. It’s not huge things on this mountain I’m climbing, but the little spurts of joy I have to grip onto.

Wondering

I’m always wondering whether all the drugs I take are helping me or not. The easy way to find out is to miss a couple, but this just proves that I can’t do without them.

I also wonder if people actually understand at all what I’m going through. My family seem to think that I am getting better, when I don’t actually feel that at all. Maybe they are in more denial than I am? I find that connecting and speaking to others who are chronically ill makes me feel less alone in my suffering. It’s hard to talk about suffering, no-one really wants to hear how difficult life is all the time. No-one really wants to know because they don’t know how to react and there is only so much sympathy they can give. It’s not sympathy I want though, in fact it makes me squirm a little. What I would really like is empathy and understanding.

In reality, though, no-one understands the suffering of another person, it’s all relative. If you’d have said to me four years ago, how would you feel if you were in pain every day and unable to walk, I’d have had no idea. It’s no wonder that no-one else understands.

Turning

I have pondered over this one quite a bit. I could say how I’m turning into a statue, but I really hate that term. Stiff person syndrome is often called Tin Man syndrome because it’s sufferers turn stiff, but this seems to be a different experience for those with the condition. I have a particular form of the condition, progressive encephalomyelitis with rigidity and myoclonus. I’ll explain each term in turn;

Progressive: it will get worse
enchephalomyelitis – swelling on the brain and/or spinal cord
rigidity – becoming stiff or ‘rigid’
Myoclonus – jerking, spasms, involuntary muscle contractions

I’m not turning into a statue, but each part of me can become stiff, either for a little while or permanently. Medication can help, but there are certain muscles that have been stiff since my first attack 3 1/2 years ago and they haven’t improved. The IVIG has helped with the myoclonus, I rarely jerk now, which makes it a little more comfortable being around others.

Getting

The hardest part is getting people to understand. When the condition is so rare not even the doctors understand what is happening to me, how am I supposed to explain it to others. I’m told constantly by family and friends that I look like I’m getting better, when I know I am getting worse. I can only assume that I am getting better at dealing with it all.

Well, actually, I know I am getting better with dealing with it all. I used to panic when the pain in my chest got so bad I could barely breath. Now I just relax and deal with it, I know it passes eventually. I would panic when my body would go into completely stiff spasms and render me paralysed, now I just get on with it. It hurts, but it doesn’t last forever. I used to freak out at the fact that I was constantly in pain and it just wouldn’t stop. Now I just accept it and carry on. And sometimes I carry on a bit too much and end up getting myself into such a state that all I can do is nothing at all. When life throws this kinds of crap at you, all you can do is get on with it.

Desiring

What am I desiring? Well, it could be a cure, a medicine that works and makes me feel good again. I could desire some real understanding from someone else, not sympathy, but empathy and the right kind of care.

Or maybe I could desire the ability to walk again and get on with my life like before, to run around with my kids, to drive my car, to go out alone, to go back in time and stop this condition from taking everything away from me.

What if I could keep it simple and desire a lovely holiday with my family, the ability to sit on the beach and enjoy some fun with my children. It’s the simple things that keep me going.

Or an evening at home when everyone is in a good mood and chatting and the television gets drowned out. And there is laughter and joy and for a while the pain really doesn’t matter at all.

Linking up to Sheryl from A Chronic Voice, for June’s Link Up Party

You can read my May Prompts Here

On Yer Bike! Or Tricycle?

May 10, 2019 by Anne Sweet 4 Comments

Do you remember your first bike, or tricycle? I’m not sure if I had one when small but I do remember coming home from school one day and my Mum had bought me a brand new bike.

I could ride it, but if I’m honest, I didn’t go out on it much and ended up selling it about a year later. Then I spent a day with my step-brother’s and sister at their home (ironically, not far from where I live now) and we rode our bikes all day. I had not had so much fun in ages.

You Never Forget How to Ride a Bike

Many years later we had a wonderful holiday at Whinfell Forest and I got on a bike again for the first time in a very long time. It was amazing at how quickly I picked it up again, it was so much fun wheeling around the park and seeing all it had to offer.

I have to admit though, I was a little sore that night!

My balance is really poor now, I would never be able to ride a bike. If my legs worked properly though, I certainly consider one of these tricycles.

This one is my favourite colour, and it’s electric too, great for when the going gets tough. You have to admit, it’s a lot prettier than a mobility scooter!

A purple tricycle with a basket on the back. — Jorvik folding electric tricycle.

How great is it that you can fold it and put in the car boot!

Star has never been able to ride a bike because of balance issues. She has recently been diagnosed with Marfan syndrome which means her limbs are longer than usual and her connective tissue is looser. A tricycle like this would mean she’d get the chance to ride a bike for the first time.

Jorvik Story

I was intrigued to learn more about these tricycles. Of course my first instinct was how wonderful they would be for people like me and my daughter. Little did I realise that they were invented for people like us.

This is the Story from the website;

Born out of love.
When James Walker needed to find a good quality trike for his father, Stuart, who suffers from Parkinson’s disease, he discovered a problem.
Choice was limited, designs were outdated, and most were out of his budget.
As any family facing hardship would attest, James felt compelled to help his dad continue to do what he loves. But he was running out of options.
Not willing to give up hope, he decided to take matters into his own hands.

And Jorvik Tricycles was born.

Isn’t that just lovely. The company also supports charities that might one day find a cure for Parkinson’s, MS and other life-limiting illnesses. Just like mine and Stars.

*collaborative post

Occupational Health in the Home

May 9, 2019 by Anne Sweet 3 Comments

Yesterday I was visited by an Occupational Health Therapist. This is only my second visit since leaving hospital three years ago.

On the first visit I was provided with all the disability aids that I needed at that time. I was grateful for them, but was also sure that they would be returned within few months. Little was I to know that my condition would progress and not get better.

I decided that as my needs had changed that it was time to see what else could make me more comfortable and life easier in my own home.

The Assessment.

I’d only mentioned that I needed help with showering but the occupational health therapist was quite thorough and one of the first things she noticed was my difficulty in getting up off the settee. She suggested that an electric reclining chair would be an option, and I will certainly consider this when re-decorating my living room. For the time being though I’m having to use an extra cushion just to give me a little more height while sitting.

a brown leather riser and electric reclining chair with remote control as suggested by my occupational health therapist — *Recliner/riser chairs can be pretty stylish these days.*

She discussed all the aids that I already had and suggested a few improvements. For example, hand rails rather than toilet frames. I like this because they take up less room but will still make sure I don’t get stuck on the loo!

Wet Room

My main wish had been to turn the downstairs shower room into a wet room, but sadly there is not enough room and a pipe issue. I have trouble getting in and out of the shower and I’m terrified of falling. Not only that, but the cubicle is pretty small and when you have to sit in the shower there is not a lot of room.

I could have the family bathroom turned into a wet room but the kids still love to have a bath so that doesn’t seem fair on them. We have a shower over the bath in there so the OT came up with some ideas. I can have a shelf on the bath to sit on and a step to get in. Along with hand rails I should be able to shower in there more safely. Plus we won’t lose the bath.

Another option is a bigger shower cubicle downstairs, with a lower step in. This is a great idea so I’m happy with these suggestions. We can always change them at a later date.

The Stairs

Another thing discussed was the stairs. I use them to come down in the morning and go to bed in the evening. Otherwise I do avoid going upstairs as it’s a lot of effort for me.

We discussed a stair lift, and although we already have the electrics fitted for one, the OT didn’t think it would be the safest option for me. She believed that I would be better off with a lift. We have the room, it could be fitted in the corner of the living room and up into my bedroom. But at this stage I don’t really want a lift in my living room.

For now I’m going to battle on with the stairs, at least it gives me some exercise each day. I remember, just a few years ago, I used to run up and down the stairs a few times, at least three times a day to exercise. How things have changed in such a short space of time.

Overall, I found it a useful visit. I hope the changes that are made will make showering safer and easier. I also have to decide on what to do about getting an electric reclining chair.

All other aids mentioned I have already, in fact I have quite a lot. But I do try to disguise as much as possible, I don’t like my house to look like there is a disabled person living here even though there is. My family think I’m crazy, but in my mind I’m still finding it difficult to accept my disability and don’t want to flaunt it.

*collaborative post

Regrouping, Investigating, Boosting, Setting and Reviving

May 6, 2019 by Anne Sweet 15 Comments

Regrouping

I think when it comes to my health I am regrouping things all the time, it’s always a game of catch up. It’s hard sometimes to prioritise so things go astray, but occasionally I have to regroup and get it all back together again. I guess it’s the same for everyone, we all fall behind at times. But when you have a chronic illness it seems that regrouping things together again is a constant theme.

In the last month I have been regrouping my appointment letters and getting my calendar up to date. It seems a lot has been going on with me, Star and the Little Man.

Investigating

At the hospital last week I arrived on the ward to find two other Stiff Person Syndrome sufferers. Of course, my seat was right in the middle. The one female I see every three months when our treatment coincides, but I don’t have much contact in-between apart from the occasional text. The other Man I met on our Facebook support group and I’ve met him at the hospital once before.

It’s kind of strange how we all have the same condition but are all so very different. The female has had SPS for a long time and the treatment is working well for her, plus she has a fighting spirit and won’t let it beat her down.

The man is older and has other conditions, but still he can walk and drive whereas I can’t. But, then I do have a specific form of the condition which makes it worse for me. My bad luck!

Back to the Investigating. We asked the nurse about some treatments we had heard about and he gave us the full run down. I won’t bore you with the specifics, but it’s so different reading up on things like stem cell transplant or Rituximab on the Internet, than it is listening from the medical profession. In particular one who has experience in experimental treatments.

The long and short of my investigations are; I’ll not even try for stem cell transplant unless it’s my last hope. But I will see if my consultant manages to get funding for Rituximab. However, having heard how expensive it is I’m not holding out much hope.

Boosting

I am always trying to boost my health with my diet. After all, what you put in makes such a big effect on how your body reacts. But the other big thing is boosting your mental health.

Mine has taken a big dip in the recent months, but I really want to try and make things better again. I have a lovely retreat planned in a couple of weeks which will give me a boost, both in confidence and mental health.

I’m also exploring ways of increasing social activity because I know that sitting home most days is not doing me any favours. I don’t mind being alone, I have plenty to keep me occupied, but there is something about getting outside of the house, or just interacting with others that gives me a boost.

Setting

Last month I set myself a goal of getting out of the house once a week which I’ve kept to, often going out more than once.

I like setting goals and I’ve a few crochet ones that I have for May. I’ve also set myself a goal of reading/listening to four books this month.

Reviving

As I do spend a lot of time at home I think it’s time to revive the tired decor. In particular the living room. I have just to wait for someone to actually do the work now, and I’m hoping it will be real soon. Then I can order my new carpet.

I’m also hoping to get my bathroom revived, or rather re-structured as a wet room. We have a family room upstairs but the downstairs shower room is the one I have targeted. A wet room would make my life so much easier and safer.

So that’s my interpretations on the prompts this month from A Chronic Voice Blog written by the lovely Sheryl.

You can read my writing prompts for April here.

May link up party poster, back of woman facing yellow wallpaper and the words, regrouping, investigating, boosting, setting and reviving

Don’t forget to enter my Jord Watch Competition

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