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stiff person syndrome

Breathing My Way Through March

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Each month I take the writing prompts from Sheryl at a Chronic Voice to talk about my chronic illness and how it affects my life. Or I just ramble on about my life in general, I like to share. Here are Sheryl’s prompts for March, Incorporating, Breathing, Smiling, Stopping and Relishing.

pin poster with prompts, breathing, smiling, stopping and relishing and a gif of a butterly and women in a wheelchair.

Breathing

I want to start with Breathing because it’s very important to me. Well, okay, it’s very important to everyone, but I don’t think I’d be here today if I didn’t use my breathing techniques to keep me calm. I first learned about breathing techniques when I was pregnant with my first child some *cough* 33 years ago. I was quite into what was known as ‘New Age’ things which had become quite a thing in the 80s. I loved yoga, crystals, meditation and all of these focused a lot on breathing techniques.

I practiced some calming breathing techniques to help me through my labour and I’ve kept practicing them ever since (have you met my first born 🙂 )

Simple breathing techniques can be used to help keep you calm during times of stress and help you get through painful experiences. I now suffer from terrible spasms which affect my entire body and can cause my heart to race. My chest can feel tight and painful and I can be gasping for breath, it often feels like I’m having a heart attack. Thankfully, my experience has taught me that all I have to do is keep calm and breathe. (Sometimes I need a gentle reminder from my husband.)

The simplest techniques can often be the best, just counting as you breathe in and then again as you breathe out is such a easy way to calm yourself. I taught it to my kids from an early age, it’s so relaxing. I can’t have an MRI without using my breathing techniques because of my claustrophobia.

We take breathing for granted, I think everyone should take a moment every day and just focus on their breathing. You don’t even need to know any specific techniques, just think about your breathe going in and out, feel it, see how your body rises and falls. Keep breathing. Stay calm.

Incorporating

I feel like I’m going back in time as I am re-learning all about crystal healing but I’m incorporating it with something new and learning Reiki too. It’s not really all that new to me as I did something called ‘hands on’ healing back when I was younger. I also used my crystals to transmit healing. It might not be something that all people understand or believe in, but I do find a real connection when working on this kind of healing. I feel a kind of power whenever I walk into a shop that sells crystals, I really do think they resonate within me.

I’m learning a lot more now than before though. Back in the beginning I had books to learn from, and I would go and speak to people who were also learning the same things. Now there is a whole world of information at my fingertips thanks to the Internet. Incorporating the new found information along with the things I already remembered has been an amazing experience. I just want to keep learning more.

I started my course using The Centre of Excellence which offer so many different courses in many subjects but particularly mental health and healing. I am an affiliate so if you do click through and purchase a course I may earn a little money at no extra cost to you. Thank you for your support. If you are interested do take a look, the courses are really cheap at the moment.

sprouting seed in sunlight
Centre of Excellence All courses £29

Smiling

When you have a chronic illness it’s difficult to find things to smile about, but it’s true that smiling makes you feel better. There is even such a thing as laughing therapy. Sadly, laughing causes me pain. Seriously, if something makes me laugh out loud I get terrible painful spasms, its so not funny! I do love smiling and finding things to smile about.

It can be a happy story you have read, an action from one of your children, a kindness from a neighbour, a pretty flower, a cute animal, anything at all that can make you smile. Smile and the world smiles with you. It really is contagious.

If you want to learn more about the benefits of smiling then please take a look at this lovely post Smile Power! Emotion and Physical Healing from Katie at Pain fully living blog

Stopping

While I have been turning back the clock and re learning healing techniques, it has also encouraged me to stop a lot of things that cause me distress. I have found that I am spending less time watching the news and waiting for the latest Covid updates. I am slowly learning to stop fretting about things that I cannot control and focusing more on those that I can. I have already had my first vaccination and hopefully it’s the start of a better future. I don’t know how long it will take for things to get back to normal if they ever will, but I have decided that stopping fretting about it all is the best thing I can do.

Relishing

I guess the thing I am relishing the most is the ‘thought.’ It’s something my Mum always used to say, I relish the thought. She meant, if only! But, my Mum was never a really positive person, honestly, I think we were both opposites in personality, where she was always expecting the worst and only wishing for the best, I tend to accept the worst for what it is and relish the best things in life. Sometimes you have to look a bit harder for the best things but they are there.

I relish every cuddle from my children, I know that they are growing up but even the older ones are still up for a hug. I don’t remember getting many hugs from my Mum so I relish every one I can share now.

I relish every bit of weather. It can be snowing, it looks beautiful and if I’m cold I can snuggle under a blanket. I’m lucky I don’t have to go out. It can be raining and I’ll relish listening to the downpour, I love nothing more than falling asleep at night to the sound of pouring rain. I relish the sunshine and the warmth it brings and I know that warmer days are coming where we can spend more time outdoors. I think March in the UK can bring us different weather every day and I love it all.

There is not a lot to enjoy in these difficult times but we can relish every happy moment and hope that more freedom and enjoyment is to come. I relish the thought!

Thank you for joining me for this months indulgent post and thank you to Sheryl for making the link up party and giving us the prompts.

December Chronic Illness Writing Prompts

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Each month I join in with Sheryl’s Chronic Illness writing prompts link up. I’m a little late for December, but it’s not been good so far so I’m catching up with everything. This is where I write about my illness and how it affects me, using prompts from Sheryl and the December Chronic Illness Writing Prompts are:

  • Exhausting
  • Exciting
  • Socialising
  • Indulging
  • Cutting

Exhausting

I have found it really difficult to accept this part of my chronic life but sometimes you have to give in. Everything I do is exhausting. I could spend the whole time in bed I’m so tired all the time, but I still try and get up and be normal. Saturday was spent in a vomiting induced coma which I couldn’t avoid. It’s times like this that I realise I have no choice but to rest.

I have days when I feel I’ve been productive though and I hold on to these. Yes, there was a time when I’d be rushing around here there and everywhere. I’ve been a single Mum with two kids rushing from work to childcare, cooking dinner, bathing the kids and putting them to bed each day without any help. It seems like a whole other life now when I can’t even fetch something from upstairs without exhausting myself. These days, I count making a sandwich and putting the washing in the washing machine a big achievement. If I feel good I may even run the broom across the kitchen floor or fold up the washing.

Exciting

The run up to Christmas has always been an exciting time for me. I love buying and wrapping gifts, shopping, seeing the lights and decorations. Baking and getting lists ready for Christmas day treats. This year has been very different. We have no school concerts or carol services, no Christmas markets or fetes. I’m so sad that I won’t get to see my youngest child’s last ever primary school Christmas play. The last two years have been really good. Last year it was ‘The Greatest Snowman,’ and the year before, ‘We Don’t Want to Do No Nativity’ which was absolutely hilarious. I could almost cry knowing that I won’t be crying at any more Christmas nativity/concerts.

It will still be exciting though. The kids are getting older but they are still looking forward to gifts beneath the tree and fun family games. I’m excited about being able to indulge in chocolate and maybe even a little tipple of my favourite drinks. I will pay for it health wise, but it won’t stop me.

Socialising

When we heard of the COVID rules for Christmas our first thoughts were about how we could still see family. Then we came back down to earth and thought sensibly. Graham’s Mum has been in his ‘bubble’ and he’s been able to visit her at times. But, we haven’t seen her, just Graham. We will invite her over for a while to see her grandchildren just before Christmas. Our house is bigger than hers so it makes sense she comes here. We’ll have sandwiches and cake and swap gifts. I think 90 minutes is the time limit. She’s not classed as vulnerable, but we are.

My brother will probably stop by for a short visit too, he might bring his wife. He’ll come on a different day and won’t stay as long. That’s as far as my socialising will go, there will be no parties or events this year. I’m not even going to my usual ballet which I love. (I can stream it live for a small fee but it won’t be the same. I might just pay to help them out as I know they are struggling.)

I am lucky though. I live with my five children and husband so we have a full house anyway. We don’t need others to socialise we have each other. (Sometimes, it is nice to imagine what it would be like to be alone!)

Indulging

Christmas is the season for indulging. I’m just hoping my body can hold up to the abuse it will endure…oh dear, even a bar of chocolate can make me feel ill. I’ve learnt how to cope though….treats earlier in the day mean that my sleep isn’t disturbed. I’m not supposed to drink, but a little glass is ok, I just have to miss off a couple of my drugs. So long as I’m not doing it all the time then I should be okay.

I have been indulging in Christmas movies. I get up early at the weekend and the younger ones always have other stuff to do on their tablets or laptops. So I sit her with my blanket and put on a Christmas movie. I don’t care how corny it is, or if I know exactly what is going to happen within the first ten minutes, I still enjoy just switching off and enjoying. I’ve not been able to read or listen to many books lately so its been my escapism.

Cutting

In a year where we have had to cut back on so much it seems hard to even think about cutting back on anything at the moment. I’ve nothing bad to cut out of my life, not even habits. But I will be cutting down on spending after Christmas. This year I’ve not really thought about it. I knew I’d have enough for Christmas because we’ve had no days out or holidays to pay for. But I have been a little frivolous particularly with take away food and giving the kids whatever they wanted. I really want a holiday next year if possible, even if it means a caravan in the middle of nowhere. I do have a holiday booked already so hopefully that will go ahead. I will want to cut back on spending before then so we can indulge ourselves while we are away.

Chronic illness writing prompts december.

Thank you for reading. I hope you all have a Merry Christmas and I will look forward to reading you all again next year.

If You liked my December Chronic Illness Writing Prompts post you may enjoy some of my previous posts.

Chronic Illness Writing Prompts for September

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

Writing Prompts for September

  • Feeling
  • Gruelling
  • Tempting
  • Running
  • Mending

Feeling

I think being at home so much means that you focus on your feelings a lot more. Sometimes it’s good, but sometimes it’s not. When we first went into lock down I felt scared but soon settled into a kind of peacefulness. We had passed the period where we knew we were safe and stayed home to keep it that way. Most people were doing the same so it didn’t feel like we were missing out. We were happy in our little bubble.

image shows a bubble to represent our happy, safe, family bubble

As time as gone on, my feelings have changed. I’ve found myself getting angry at people not taking the pandemic seriously. I’ve felt annoyed, sad, confused, misunderstood and practically any other feeling in between.

I missed my holiday this year, the change of scenery the peace of listening to the sea roll in, and the enjoyment of the children running around having fun. Instead we’ve been stuck at home, being entertained far too much by screens and totally missing any kind of pleasant scenery. I wish I had a nice garden but gardening is beyond my abilities and no-one else seems interested in helping out. Sometimes being at home has felt good, other times not so.

Gruelling

When you have a chronic illness sometimes getting out of bed is gruelling. Making your way through the day is gruelling, then trying to sleep at night is also practically impossible. I found some of the tropical nights we had this year particularly gruelling. I couldn’t sleep because I was way too hot, but the fan would give me a headache and having the window open just let in the noise of the neighbourhood. By the sound of it, I wasn’t the only person who couldn’t sleep but I don’t think I was quite so vocal about it. Probably because I wasn’t fuelled with alcohol.

Also, I have just had another MRI. I find these particularly gruelling, although I am getting used to them. The first one I ever had was abandoned when I had a panic attack. The second was so long it gave me nightmares. Since then I’ve learnt how to cope with them much better. This last one was not so bad at all. I had to be pinned down which I hate, but at least I didn’t have to wear a mask too. I was given ear plugs and head phones which I’ve not been offered before. It all helped to make it an easier experience. It’s just a shame that my body doesn’t like them either. When they pulled me out I’ve been lying still so long I couldn’t move. They had to wrench the panic button out of my hand and massage my limbs to get me feeling again. Then sitting up was incredibly painful. I was so disappointed because I’d managed so well while inside the machine.

Tempting

Quite the opposite, I think I’ve done really well in resisting tempation. I’ve cut down a lot on foods that are not good for me. I have made some big changes to my diet and it has definitely helped me health wise. I’ve had much less problems with bloating for one.

I’ve used Mindful Chef to help me improve my diet, it’s easy when you can get all you need given to you in one box to cook. But, I’m learning a lot and I hope that soon I will have a lot more on my menu that will help to make me feel better as well as full!

Running

I think, as someone who can’t use their legs, I’m going to use this prompt to write about the things running about in my head.

image shows a brain with images of running women over the top to represent the thoughts running around in my brain.

The COVID-19 virus is never far from my mind and it astonishes me that some people just don’t feel the same. People carry on as normal, adamant that the virus won’t affect their lives. And it’s true, for a lot of people it won’t, they could even catch it and recover in just a few weeks. They are the lucky ones. But would it hurt for them to think of others less fortunate?

I read something today that made me think again. More thoughts to add to the marathon in my mind. If someone has never experienced chronic illness then how can they understand how it affects a life. It’s not something that anyone can really understand, it’s hard enough to understand when you are living it day by day. I sometimes wonder how I’m going to carry on living when I know that each day will be filled with pain. Even to me it can be unthinkable.

If you have not experienced being sent to hospital in pain and then told, oh, we don’t know what to do, we can’t treat you, then there is no way that you would believe it to be true. But it is. If you are fit and healthy you instantly think that if you get sick then the doctors will fix you again. It’s not that simple, but it’s hard to think otherwise.

If you don’t have anyone in your life that you fear might die if they get the slightest illness, then how can you imagine what it would feel like having an invisible virus that’s ready to jump on them at any moment?

These thoughts have been running around my mind and I’ve been trying my best to understand. Had this virus been around 10 years ago, I would have reacted very differently too. People can’t comprehend that life can change in an instant. People protest about confinement, masks, social distancing, not being able to work or go to school. Apart from the masks, these are things that have already restricted my life for a long time. I have no choice and it’s doubtful it will ever be any different for me. For others, a normal life will resume, it’s tough, but it’s not forever.

I know there are others out there who understand only too fully. For everyone else, all we can ask is please be patient. Your life will resume, providing you don’t catch the virus too bad.

Mending

I’m always trying to mend, my health, my state of mind, my family disruptions the list could go on. Mending is just a way of life for me.

At the moment though we have our car in the garage because it needs mending. After just a year it broke down and couldn’t fixed by the RAC so it’s off to the garage. We have a courtesy car so we still have transport which is good because next week more mending will be going on.

Starting from Monday I will be on the day ward each day all week at the hospital receiving the infusion that mend my immune system. I’ve read that my treatment IVIG was given to patients with COVID in China which helped their recovery. I am hoping that by giving my immune system this boost it may make me less likely to be affected by COVID should it come into my life.

For those that don’t already know I have Stiff Person Syndrome plus progressive encephalomyelitis with rigidity and myoclonus (PERM)

Do check out Sheryl’s site for more chronic illness blogger’s takes on these writing prompts for September. Click pic below.

September writing prompts, feeling, gruelling, tempting, running, mending.

Monthly Chronic Illness Writing Prompts. Why I stay!

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Each month I like to join in with Sheryl’s writing prompts. She gives the prompts and then I have to write about each of them and how they apply to my life. This month I’m really thinking about why I stay.

The prompts this month are

  1. STAYING
  2. DOING
  3. BEING
  4. TARGETING
  5. WEIGHING

Staying – Why I Stay

So much of the time, especially in the recent months, I’m thinking why I stay. Yes, I mean why I stay alive, why I stay here on this planet, why I stay here in this house, this home. A lot of the time I don’t want to stay, I want to be anywhere but here.

My family drive me nuts, my illness drives me nuts, my daily routine drives me nuts. My work, my words, my life, waking up in the morning, going to bed at night, it all drives me insane. I so often don’t want to do it anymore.

But then I think again. We only have one shot at this life and so far I’ve been through a lot. But that’s my life and that’s the one I was given. Yes, I could have been given a life of luxury with a nice house, plenty of money and lots of holidays. I could have been given a life in war torn Syria. But I wasn’t, I was given this rather ordinary life in England. Which got messed up along the way, but it’s still my life.

And I still have things I can be proud of. Especially my children. And that’s why I stay.

Doing

What will I be doing this month? Well, we are currently in the process of having our family bathroom turned into a wet room. That means an accessible shower for me. So, although I won’t be doing the work myself, I’m coping with the workmen every day disrupting my daytime routine. (You know, the one I’m sick of!)

Then I’ll be helping my husband re-arrange our bedroom in preparation for my lift. He’ll be doing all the hard work, but I really need a huge purge, so I’ll be telling him what has to go. (including two bookshelves full of books.)

Being

I guess I’m being me. My usual moany but unable to ask for help self me. My hope is that I can be different. I feel as though I have learned so much recently. I have done a lot of studying and reading and learning, but the last couple of years I’ve become so much more aware of people. I’m not so sure I like people very much which is strange seeing as I have a degree in psychology. You would think I understood how people behaved, but trust me, it’s takes more than a psychology degree to understand people. So, I’ve decided that I have to start really being who I am and forgetting about what other people think of me. So watch out for me being different. Although, I may just appear to be the same. Some things I refuse to change.

Targeting

What am I targeting this month? Well, I guess it has to be my health. I’ve been reading through my consultant’s letters and something clicked in how my health has changed over the past few years.

There are two things I need to target. My mental health, which I’m already working on with a counsellor, but I also need to work on more pain management. I thought I was pretty good at mindfulness and mind over matter, but it turns out that, yet again, I have much to learn. I will be focusing on this a lot over the next month (And forever.)

The other thing is my weight, or more specifically, my diet. I have learnt that specific things trigger me, too much, or too little sugar can have an adverse affect on my health. Also, my stomach suffers after eating certain foods so I really need to avoid or find alternatives for bread, milk, some fruits and coffee. There are probably a few more things I need to add to list, but it’s not so simple as following a specific diet, this has to be ‘my’ diet. I do need to lose weight too. Before I got sick I used to fret about being 7 lb overweight, now I’m more like 28 lb overweight and it’s hard to shift being so immobile. I barely eat anything as it is so it’s going to be hard to shift, but I’m sure it will make me feel better.

Most of the weight I put on after having high doses of steroids. Not everyone is the same, but after the first dose of IV steroids I put on a few extra pounds. Then a year later I was given a second dose of IV steroids followed by six months worth of them titering them down each week so I didn’t stop suddenly. This dose caused me to put on most of my weight and also destroyed three of my teeth. (My dentist said that steroids do not affect teeth, but after talking to others I found out its quite common.)

a plate of healthy food

Weighing

I’ve just confessed about my weight gain and how I need to change it, so now I’ll talk about something else.

I’ve been weighing up my life in general and working out the things that have the biggest effect on my health. As I’ve already stated I’ve identified these as mental, food and weight.

Overall, my current quality of life isn’t good but after weighing everything up I am coming up with plans for improvement. My home will be improved to help my ability to cope, my mental health is having a real good spring clean, and my physical health will hopefully improve too.

For four years I’ve been looking for a cure, and came to the conclusion that there wasn’t one. But after weighing it all up, maybe I was wrong. Maybe I can get better, or at least improve a little.

I started this post by talking about how I have been so close to ending it all, but as you can, my positivity has won over and I am already working on how to make life better. I lost faith in myself and in humanity, but my cup never fully emptied and I know I can fill it up again.

Thanks for reading and if you’d like to see how other’s have interpreted these writing prompts then please click the image below.

A chronic Voice link up badge

My Writing Prompts for February

Stiff Person Awareness Day 2019

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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.

A Zebra...when you hear hoof beats think zebras, not horses. Stiff Person Awareness Day

Previous SPS Posts

and many, many more because I’ve harped on a lot about it for the last 4 years 😉

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