Stiff Person Syndrome

July Chronic Illness Writing Prompts

July 2, 2020 by Anne Sweet 8 Comments

Each month I link up with Sheryl over at A Chronic Voice and these are the chronic illness writing prompts she has set for July.

Writing Prompts for July

BOTHERING
DEMANDING
NOURISHING
TELECOMMUNICATING
TOLERATING

Bothering

I was thinking about this only this morning. Since we have been stuck at home because of the Corona Virus I have been bothering less about the little things that used to drive me crazy before. Particularly with my husband not doing stuff. Before I’d be moaning about him not putting up a shelf or painting the bathroom, but now I really can’t be bothered. I can’t really explain it, I thought being at home all the time would be the perfect time to get things done.

But we have sort of developed a more relaxed type of life. I’m not busy getting the kids ready for school or appointments, and we don’t have to worry about visitors. Why not chill out and bother less? In a way, it’s been a lot less stressful for me, I would have done so much of this stuff myself before I became disabled. If I was healthy now, I doubt there would be anything left to do…but I just can’t motivate myself to bother my husband about it. And he certainly doesn’t seem bothered.

Demanding

I’ve found looking after the kids pretty easy, but the school is demanding they do more work. Honestly, I can get my Little Man to sit with me and go through his stuff, but the girls are older, they are responsible for doing their own work. But it seems the more I demand of them, the less they want to do. I’m pretty sure they’d jump up if one of their teachers asked them to work. But they just don’t listen to me. I had a fall out with Boo and demanded that she took her headphones out and listened to me. She wasn’t happy about it.

I try not to be too demanding. Yes, I believe their education is important and I really don’t want them to fall behind. But, on the other hand, I’m pretty sure that they will catch up again once given the chance.

Nourishing

Eldest son is a little overweight, as am I. We don’t get much exercise and since I got sick the weight has piled on through inactivity and medication. Some people say that steroids do not make you put on weight, but I guess that’s because in many circumstances, steroids give a person more energy to do stuff. I have had high doses of steroids on two occasions now, both for six months. Each time I’ve put on the pounds. Then I’ve found it hard to shift them again.

So, I sat down with eldest son and we worked out some healthy meals we’d like to try. If we can’t get out or exercise much (he has an exercise bike) then we can try and lose some weight by changing our diet. In my case it has to be a change because currently I don’t eat very much. It makes sense, if you don’t do much you don’t get so hungry. Not only that but I have some bad digestive issues. So, we are now nourishing ourselves with at least three healthy meals a week and eating a lot more fruit and vegetables.

Telecommuncating

I’m not a telephone person. I don’t like video calls either. I find sitting with the phone against my ear uncomfortable and concentrating on conversations over the phone difficult. I’ve never even tried zoom or face time. It’s just so alien to me. I used to talk to my Mum on the phone until my ears burned, but I really don’t talk to anyone much now.

I’ve found that trying to talk to anyone on the phone these days has become more difficult too. A call to the surgery, or the chemist, or basically anywhere at all for assistance has been a nightmare. I’ve lost track of the hours I’ve spent listening to ‘on hold’ music over the last few months. I’m beginning to hate the phone even more.

chronic illness writing prompts July, a mobile phone

I’ve had to give up counselling. I was half way through a six month session with a really good counsellor just before lock down. She wanted to keep in touch by phone, but it just didn’t work for me. I didn’t feel comfortable talking in my own home on the phone. So, I decided to stop and now I’ll have to wait for another chance to continue in the future.

I also have an appointment with my consultant next week on the telephone. It won’t be the first time, so I know what to expect. I will have my ‘script’ in front of me so I don’t forget anything I need to tell him. I’d rather see him in person, but I guess it’s best not to visit the hospital just yet.

Tolerating

I have been tolerating the weather better. Last year I found the hot weather really difficult, but I have managed to get through hot days okay, and slept through hot nights. Colder weather brings me more pain and it keeps changing from hot to cold. Over all, though, it has been fairly tolerable.

One thing I have not tolerated is my pain. Part of me wishes I’d never stopped my infusions. Not that I’d be able to have them right now anyway because of the virus. I always believed that they didn’t help much. But, there are so many differences I’ve noticed since I stopped. I have no chance of getting them back now, but maybe my consultant can help. I don’t know, he’s not really found anything so far that works.

The dystonia on my left side is a regular occurrence now, I get it at least once a day. I’m beginning to think that it’s so regular it’s going to become permanent. That scares me. Losing half of my body is something I would not be able to tolerate. I only manage to get through it now because I know it will pass. It’s scary when you lose control over your body, even temporarily.

I’m also having regular spasms that are becoming worse, they affect my throat, shoulder and chest. Sometimes I find it difficult to breathe and I need help to move me into a position to help me breathe better.

The headaches come and go but they are becoming more frequent. I wake up with a headache and it gets worse as the day goes on, to the point where I can’t wait to go to bed. Then I wake up in the night because the pain is still there. I wake up in the morning and it still hurts. It can go on for days. In the morning it’s tolerable and I can do things, but by evening I’m fit for nothing.

I don’t want to end on a bad note though. My health problems may be getting worse, but one thing I have noticed is that we are tolerating each other better as a family. We have spent more time together while being stuck at home all the time and I thought it would cause more arguments. However, apart from the occasional falling out, they have got on so well. We’ve had fun together as a whole family on a few occasions which is very rare, as usually everyone is off in their own space.

Last months chronic illness wriring prompts Link up post.

June Chronic Illness Writing Prompts

June 2, 2020 by Anne Sweet 10 Comments

Each month I join up with Cheryl from A Chronic Voice, to use her writing prompts to tell my readers about how I am coping with my health issues. The June writing prompts are; Searching, Hoping, Traumatising, Honouring and Responding.

Searching

I have been searching online for gifts for my husband for Father’s Day, my brother for his birthday and my eldest daughter for her birthday…all in June. Then I have the kids birthdays in July and August. Searching often takes place online anyway as I don’t get the privilege of browsing shops like I used to. Now, I am even less keener on going out.

I’ve also been searching for some comfort and peace in this crazy world. It does sometimes feel like the world has gone mad and people just don’t seem to make sense to me. I know that my out look on life has become different since I became sick and disabled, but I always feel as though there is always a place for compassion. Sadly, this world often seems to be missing compassion and I feel as though I’m missing something. So, somewhere in this crazy world is my place, but I’m still searching for it.

Hoping

I always try to live by hope. If you don’t have hope then things start to fade fast. I have lost hope in the past but deep down I still hope that there is a treatment for me that will actually work. I also hope that one day I’ll be able to move and walk again. When I first got sick I was told that I’d be walking again in around 8 weeks, it seemed like a lifetime to a generally fit person. 12 months later I was given a different diagnosis and although my consultant said I could get better, nothing we have tried so far has had any effect. Hope is easy to let go of in these situations. But I will keep trying, maybe my diagnosis is wrong, maybe the treatments aren’t working because the real cause isn’t being treated? I hope that I can find a way.

I also have to keep hoping that my children will be okay. My daughter is getting older and her physical problems are becoming even more of a problem. But I can see signs in my younger two children as well. They don’t complain much, but I still hope that when they have their genes tested that all will be okay and we can all hope for a brighter future.

Finally, I hope that there is healing for this world and the crazy situation we find ourselves in. There has to be an answer out there, surely this can’t be how it has to be from now on.

Traumatising

Last month was very traumatising. Luckily we have been untouched by the virus thanks to our carefulness in staying home and avoiding contact. As part of the Office of National Statistics testing we are also positive that we are not infected with the virus as we get tested regularly and will be tested for a year. But that doesn’t mean there hasn’t been trauma.

I’ve been traumatised by a couple of poorly episodes. One day when my pain was so bad I couldn’t move all day, but the pain seemed to be starting from the right side of my brain, right where my unwanted resident Walter resides. It was quite worrying for a while, my family were quite traumatised.

Then last week I had a spasm just as I was getting into bed but it worked in a different pattern affecting my right side when they are usually left sided. Also, the spasm affected my neck and caused me difficulty in breathing. Thankfully my husband was there and he was able to move me into a position where I could breathe properly and then the spasm in my neck eased quickly. The rest of me stayed in spasm all night which wasn’t much fun. But at least I didn’t feel like I was dying.

Also, Star, who has Elhers Danlos Syndrome and has had surgery on her cervical spine, had a day when her neck was hurting real bad. We decided she needed a better pillow and bought a special one to support her neck. The pain subsided after a few days, but I hate seeing her suffer and it brings back all the trauma of what she’s been through in the past.

Finally, and I did say it had been a traumatic month, Graham had a nasty accident while attempting to fix our washing machine. It should have been an easy fix but it involved stretching a wire and fixing it together, his hand slipped and hit the metal rim of the inside of the washing machine. It sliced right through his hand severing the tendon to his thumb by 50%. Had it been any more he would have lost the use of his thumb permanently. Now, he has his hand in plaster and won’t be able to use it for weeks.

Honouring

Tough one this, but I’ll have a try. Can I go with honouring a promise? My entire life has been built around protecting my family. I’ve not done a brilliant job in some cases, especially in the early days, I got a lot of things wrong. But I promised that we would stay safe during this epidemic and we have done everything we can to honour that. We haven’t been out, Graham is the only one to have left the house, and then that has only been when necessary and he’s taken every precaution. Also we haven’t socialised, met up with friends and family, taken trips or been in crowded places.

We don’t have any plans to be going out any time in the near future. We are not safe yet, this epidemic is not over and I will do what I can to honour my promise to keep my family safe.

Responding

I have to admit that my personal response to the events of the past month have been quite intense. I’ve felt like shouting at the television and computer screen on many occasions, but I think I’ve reigned myself in quite a lot. Its not that I don’t want to have my say, get my views across or stand up for what I believe. But I do think that sometimes you are yelling into an echo chamber and it’s not good for your health.

I try to inform people when they have got things really wrong or are spreading things that are simply not true. But to be honest, I have almost given up completely on responding to anything. There is just no point, everyone has their own opinion and, well, they are entitled to it.

Click image for June’s Link up

See my last Chronic Illness Writing Prompt here.

May Chronic Illness Writing Prompts.

May 3, 2020 by Anne Sweet 17 Comments

Each month I join up with Cheryl from A Chronic Voice, to use her writing prompts to tell my readers about how I am coping with my health. The May writing prompts are; Foreseeing, Panicking, Upbringing, Accessing and Soothing.

May Writing Prompts

Foreseeing

As someone with a chronic illness I think I kept a close eye on the rise of this pandemic and I guess I did foresee how bad it might become. That is probably why we have been staying home a little longer than most. My children and I had a virus (not THE virus) just before COVID-19 became big news and the kids were off school unwell. I took the decision not to send them back and was worried how long I’d be able to do that. Then within a week the school was closed anyway. The kids don’t seem to be bothered about the amount of time they’ve been off school, despite it being longer than the Summer Holidays right now and not knowing how much longer it will be. We’ve not even done any of the fun days out and stuff we generally manage during the holidays.

Maybe not foreseen but prepared. My poor kids are used to not going out thanks to their Mum being sick. It really doesn’t bother them.

Panicking

I will admit I was panicking about the virus when the pandemic was first announced. I had nightmares, I was scared. My daughter was still working although my husband was taking her in the car so that she didn’t have to catch the bus.

Since being at home for so long our immediate panic is over. We know we are not sick and are less likely to get sick from this virus. We have also been chosen to take part in regular testing for scientific research, so we will know if we have had the virus (I doubt this) if we are immune to it, or indeed if we catch it. It does sort of help with the panic.

There are other things I have had panics about though. I had a confusing letter from the hospital about my MRI scan. It said that ‘something’ was wrong with my brain but I was not to worry too much. What that ‘something’ was I couldn’t work out from the medical terms in the letter. So, I arranged a telephone consultation with my neurologist.

He explained that my brain was under pressure, but it was low pressure which is not as dangerous as high pressure. At some point my brain had bled. This could have been from a blow (which I can’t pinpoint, but I have so many accidents it’s hard to say) or it could be idiopathic. (It just happened) Anyway, I have fluid covering my brain that shouldn’t really be there but it’s not much, not enough to worry about. I also have blood clot, but it’s more like a scab on the surface of my brain, so it’s not in my blood stream, it’s not going anywhere or going to cause me any trouble. (Although, they will keep an eye on it.) I’ve named it Walter, because I always believe that naming things make them less scary. Walter may have caused a little panic at first, but he’s fine now I know what he is.

Finally, I had a panic when I found out that I was robbed! My bank was emptied over the Easter Holiday with someone taking every penny I had. Thankfully the bank was very understanding and I did get my money back pretty quickly. I’m still waiting for Paypal to sort things out though as my account there was hacked too. In fact, I think it was through Paypal that they got my bank details as they were connected.

Upbringing

As Sheryl explained in her list, upbringing is a little mismatched. But I guess it does shape how we live our lives.

I know as a child my family was probably a little different to many. My Mum had five sisters and two brothers and I had many cousins. I also had a few disabled cousins including peers with Down’s Syndrome and Severe Brain Damage. We were brought up to treat them as our equals, and not to focus on their differences.

This prepared me to be more accepting of disability as I grew older and one of my first jobs was working with disabled young adults.

I have three autistic children. The first was a shock, I found it difficult to accept his differences despite my upbringing. This was my child and he was perfect. Over time I realise that he’s still perfect, as are my other children.

I even have to accept that I am now disabled, I do wish my Mum and Nan were around to help me get through this.

me and my Mum a long time ago, paddling in the sea. The photo is in black and and white. — *Me and my Mum*

Accessing

As someone who doesn’t get out much, I have had experience of poor access for disabled people. The lock down has meant that I don’t have to worry much about this now. There are some areas where I have seen better access though.

As a vulnerable person I’ve had priority access to online shopping. This is so important as I have a big family to feed. I could send my husband shopping if needed, but then he’d be at risk of picking up the virus and bringing it home, which in turn would put me and the rest of the family at risk. There are seven of us at home and many of us health issues we can’t risk bringing the virus home. We also need to eat 🙂

With three children missing school I’ve also found having access to lots of learning facilities really helpful. The schools have been great with providing the access. I’ve already shared one of the Little Man’s p.e. lessons which made us all laugh but which get the kids moving every morning. The Internet offers access to almost everything and it’s wonderful that we have this resource at our hands. I feel if this had happened when my older children were young then we’d be relying on books and television. I guess we wouldn’t even have been able to access regular e-mails and ‘school pings.’ I feel so lucky and appreciate everyone who has worked hard to make all this information so accessible. Teaching at home is a difficult job.

Soothing

Every morning, when all is quiet. I open up my patio door and spend at least a few minutes (depending on how cold/warm it is) listening to the birds. Over on my Instagram highlights, I even have a couple of recordings of this sound. This is how I begin my day, and no matter what is to come I find it very soothing.

Other things I find soothing are my crochet and audio books. Sadly, for the first two weeks of lock down I wasn’t able to get motivated to do anything. I guess that was fear and panic taking a hold. I have now started to get into that place now where I can soothe myself with hobbies again. It’s good to spend some time thinking about something completely different.

I don’t know how long this disruption to life will last, I don’t know what we have to look forward to. I don’t think anyone can really predict it. But taking one day at a time is soothing. It’s all anyone can do really. You can’t really plan for an uncertain future. As someone who plans everything meticulously, I’ve found that not planning has not been as bad as I thought it would be. I understand that for many others that the uncertainty can be very scary and that so many people are suffering and will face more suffering. But, we all need to take one day at at time and start to work out how we can plan changes rather than plan to continue our lives as they were before.

Click the image for more blog posts on the same May Writing prompts.

If you enjoyed my May writing prompts you may want to read more with my April prompts.

December – Life with a Chronic Illness

December 2, 2019 by Anne Sweet 9 Comments

Each month I join up with Sheryl from A Chronic Voice for some writing prompts aimed at living life with a chronic illness. This months writing prompts are Travelling, Bonding, Warming, Coping, Ending.

Travelling

I don’t do much travelling around this time of year. My family are all close by, and the only ones who are not come to visit us. This will be on December 14th.

In November, I only left the house three times, and one of those outings was an hospital appointment! The other I was only out for an hour, and the final outing was on the very last day when we went to the local Christmas Tree lights festival. (Anyone who follows me on Social Media will have seen me saying that I’ve only been out twice in November, but that’s brain fog for you, I completely forgot about the other time.)

I will be going out more this month (Fingers crossed) but not really travelling much. I have booked our holiday for next year though. It’s still in the UK but I love a seaside holiday. I have also realised that as my kids get older these families will become a thing of the past. I still remember when my eldest kids became to old to come on holiday with us. I even remember when I got too old to go on holiday with my Mum. I feel sad, but maybe it will give me an opportunity for more travel seeing as it will cost less paying for so many children. Let’s just hope I stay healthy enough.

Bonding

We have had a week of a sickness bug running it’s way through the family and suddenly I have had children again and plenty of bonding. In particular, my Little Man. Instead of wanting to be glued to a laptop or phone or other device, with his headphones on and seemingly in another world, he has spent time talking to me and we even cuddled up together on the settee one day and watched a movie together. I think we all need this special time, either as a family or just two of us. I also got to watch a movie with my husband which rarely happens. He’s generally more interested in watching the sports channel upstairs, sometimes life is too hectic for this kind of bonding.

In past years Christmas was always a time of bonding as my Nan, who was the glue of our family, would bring us all together for the holiday. She left us many years ago now and the family drifted further and further apart. In fact I barely see any of my cousins, aunts, uncles, nieces, nephews and so on. I don’t even see one of my brother’s. So it’s just Graham’s Mum and brothers and my eldest brother and his wife. It seems so distant, those days of a house full of relatives, when the furniture would be moved around to fit them in and the chairs from the kitchen dotted around the living room.

These days the only bonding I get with my extended family is through sending Christmas cards. And sometimes I don’t even manage this.

Warming

I suffer so much from cold weather, even at home I find myself covered in blankets and layers of clothes just trying to keep warm and the pain at bay. Sometimes, you just have venture out though and that’s when the warmer clothes come in handy.

In no particular order, the things that make me feel warm in December are;

Hot chocolate with cream and marshmallows (And maybe a tot of Baileys)
Christmas Carols, I love them and know all the words
Believing in Father Christmas, the kids might be getting older but I will always believe in him as it gives me a warm fuzzy feeling.
Christmas bells, we are lucky to live near a carrillion which plays the most wonderful Christmas music on a Saturday afternoon.
Christmas feel good movies. I can watch them all, no matter how corny.
Christmas decorations, trees and lights. I get a warm fuzzy feeling just looking at them.
A lovely real fire. We don’t have one, we don’t even have a chimney (But it’s okay, Father Christmas has a magic key) but I can put the You Tube video of a real fire on my TV and put my feet up in front of it. There is no heat but it still makes me feel warm.
Christmas food..yummy, everything from chocolate to brussell sprouts. I love Christmas dinner with all the trimmings, and all the treats and deserts that are okay to indulge in over Christmas.

And there is nothing nicer than coming home after a cold outing to a lovely warm house, or cuddling up on the sofa with a blanket, or getting into a lovely warm bed. There are so many ways to feel warm.

Coping

This is a big one for me this month. I stopped my treatment, on advice from my consultant, nearly three months ago. So it’s probably completely out of my system now. It’s been hard and I’ve almost phoned the hospital on many occasions to ask them to give me my treatment (my consultant said I could do this any time.) But, on the other hand, I’ve coped better than I thought I would, and although I’ve gone backwards on many things, I’ve also noticed that some of the side effects are starting to disappear.

That’s one of the problems with a rare chronic illness like Stiff Person Syndrome, no-one really knows what will make it better, and everyone who has it reacts differently to treatments. So coping is the best I can do.

As for the season’s festivities, I cope with them by taking everything slowly. There was a time where I’d be in a tiz if my decorations were not put up on December 1st, but we have a lot on in the following week so I doubt my husband will be able to get the decorations out for me any time soon. We will also have to move furniture, something I can’t do. The Christmas shopping is mostly done online, so that’s how I cope with that. Along with very careful planning.

Ending

The end of the year, such a bittersweet time, especially as you get older. I often wonder if this will be my last year on this earth, will I even make it through another year. I often wonder how I will make through a night so this is not an isolated feeling. Some people say they are glad to see the back of the year, especially when things have not been so good. But I always look back and think of all the positive acheivements I’ve made. The bad times don’t just disappear, but it’s much nicer thinking about the good times, and there is always more than you think.

In past times the period between Christmas Day and the New Year has brought much sadness, grief and pain. It’s a difficult time for us as a family and we realise that all we have is each other, so we try to spend the time quietly, bonding with each other and coping in our own way.

I was admitted to hospital on New Years Day 2016 which is when my chronic illness journey began. So this year it will be four years sick.

Thanks for reading. I’m linking up with Sheryl here and you can click through to see other bloggers interperete the same prompts.

Stiff Person Awareness Day 2019

October 24, 2019 by Anne Sweet 5 Comments

Tomorrow is Stiff Person Awareness Day and I thought I’d try and give you some insight on what it’s like living with Stiff Person Syndrome (SPS)

First of all, it seems as though it’s different for everyone. I’ve spoken to, and met, many people with SPS but no-one has exactly the same symptoms.

Diagnosing SPS

Getting diagnosed with SPS is difficult because it’s so rare no-one really knows about it, not even doctors. I was lucky that my consultant had experience of the condition and knew what to look for.

Many people get mis-diagnosed at first, but in fact a few tests can give a positive diagnosis if your doctor has any idea of what he’s dealing with. First up, blood tests. There are certain anti bodies called GAD (Glutamic Acid Decarboxylase Autoantibodies) that attack the immune system. They are common in diabetes type 1 patients, but higher titres are the basis for a diagnosis of SPS. I do not have high GAD anti-bodies.

The next tests are the EMG and NCS. EMG or electromyography tests neuromuscular abnormalities by inserting needles into the muscles and testing them for electrical activity. The NCS or Nerve Conductive Study detects nerve damage and destruction. Positive results from these studies show the damage caused by SPS. They can also come up negative.

Another test, not often performed, is for the Glycine Receptor Anti-body which If present it gives a diagnosis of SPS with PERM (Progressive Encephalomyletis with Rigidity and Mycolonus). Which is what I have.

Other Conditons

Stiff Person Syndrome can be misdiagnosed as Parkinson’s Disease, Multiple Sclerosis, fibromyalgia or a pyschomatic illness. Unless a doctor knows anything about the condition it can take on average 6 years to get a proper diagnosis.

Just to make things more complicated, there are five types of SPS.

classic stiff person syndrome
focal stiff person syndrome
jerking stiff person syndrome
PERM
Paroneaplastic Stiff person syndrome (cancer)

Stiff Person Syndrome affects twice as many women as men, hence the name being changed from Stiff Man Syndrome.

How SPS Affects Me

I believe I had symptoms for quite a while before my diagnosis but they were not really a big issue. I’d often feel pain when startled but I though that was normal. I’d get pins and needles a lot, but I also thought that was normal. I suffered from migraines for years and often had Trigeminal Neuralgia which can (kind of) be described as a migraine in your face. These are all signs of a neurlogical impairment but I was not aware.

Then I had my first SPS attack. My body went stiff and completely numb one night while in bed. It was very frightening and I couldn’t do anything. I couldn’t even speak or call for help. I did recover however, and I spoke to my GP who believed I’d had a TIA or mini Stroke and requested a brain scan. Before I had that scan I had another attack that was so bad it left me paralysed for days and I was hospitalised.

I still have these attacks quite regularly now, but my medication helps to keep them from lasting too long. I Still suffer from pins and needles and TN and pain from startles. I can walk for only short periods and then the pain becomes too much or I just stiffen and am unable to move. That’s why I use a wheelchair to get around. I am prone to falling, I feel safer walking in my home because I know there is always something to grab a hold of. I would not be able to walk in an open space.

Stiff Person Awareness

If you have been reading my blog for a while then you’ll probably know that most of this I’ve said before. However, as it is Stiff Person Awareness day I feel that I need to use my platform, my soapbox, my blog to let people know about this incredibly rare and pretty awful condition. There was a time when people didn’t know much about cancer but think about how much researach has been done over the years. Think how many lives have been saved because people talked about it and made others more aware of what the symptoms were like.

It will be a while before even Doctors fully understand and know how to treat Stiff Person Syndrome. Many doctors don’t even believe it exists. So it’s important that people like me raise awareness whenever we can. SPS can be fatal, it can also be treated. But it’s also very rare and often unheard of.

If you would like to know more about Stiff Person Syndrome you can visit the UK and Ireland Website for information.