10 Facts About My Condition

I have Stiff Person Syndrome, I am one in a million

Stiff Person Syndrome Awareness Ribbon

Today’s Blogtober prompt is 10 Fact About Yourself. I’m turning this around a little and using it as a little awareness for my condition. In just five days times it will be our Awareness Day for Stiff Person Syndrome so this is quite timely.

I have this stupid Stiff Person Syndrome which is a condition which does exactly what it says, it turns it’s victims stiff. But it’s an extremely rare condition, believed to be one in a million sufferers world wide, and each person has different symptoms and reacts to different treatments. No doctor really knows what to do. And whenever I end up in hospital and say I have Stiff Person Syndrome I just get blank looks like I’m making it up. 

Let’s get on with some facts about Stiff Person Syndrome….

  1. Stiff-Person syndrome is characterised by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms.
  2. People with Stiff-Person syndrome can be too disabled to walk or move, or they are afraid to leave the house because street noises, such as the sound of a horn, can trigger spasms and falls.
  3. Stiff Person Syndrome is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia
  4. There are some rare forms of Stiff Person Syndrome that are due to Paraneoplastic Syndrome. The person has a cancer and might not know it yet. The immune system Ramps up to fight the cancer and goes haywire attacking other organ. In SPS case it’s the central nervous system: brain and spinal cord.
  5. Most, but not all, of patients with Stiff Person Syndrome have elevated GAD65 levels in the blood indicates that the body is creating an antibody that attacks GAD, impairing the body’s ability to make GABA.
  6. Some people with Stiff person syndrome have the glycine receptor anti-body which is generally an indication of the PERM type of the condition.
  7. Stiff Person Syndrome can cause swallowing problems to the point of medical crisis. The patient then develops severe anticipatory anxiety about swallowing and starts to avoid eating.
  8. Other disorders that can cause symptoms similar to Stiff Person Syndrome include hyperekplexia, multiple sclerosis, transverse myelitis, occult vascular malformations, neuromyotonia (Isaac’s syndrome), Schwartz-Jampel syndrome, muscular dystrophies, and metabolic myopathies.
  9. Stiff Person Syndrome was originally named Moersch-Woltman Syndrome after the doctors that discovered it.
  10. There are 5 types of Stiff Person Syndrome:

-classic stiff person syndrome
-focal stiff person syndrome
-jerking stiff person syndrome
-progressive encephalomyelitis with rigidity and myoclonus (PERM)
-paraneoplastic-related stiff person syndrome


Stiff Person Syndrome and Me

I first fell ill on 1st January 2016, but I realise now that I’d been showing symptoms for about a year previously. When I did get ill I was admitted to hospital unable to move. Intravenous steroids over a 5 day course got things working again and then I had physio to help me learn to walk before returning home 13 days later.

I was originally diagnosed with Transverse Myelitis after an MRI and lumbar puncture had ruled out MS. A year later, further testing of my muscles, nerves and blood showed that although I was GAD negative (see 5 above) I did have the Glycine Receptor anti body and was diagnosed with Stiff Person Syndrome plus PERM (6)

Next week I’ll be promoting the new Stiff Person Syndrome UK website and Youtube channel. I’ve been preparing lots of things to share on our Twitter account and I’ve made a video from clips of sufferers all over the world. The more people that know about our condition the easier it will be for future diagnosis and treatments to be made, so awareness is extremely important. 

Thank you for reading, and if you ever want to know more about Stiff Person Syndrome then please ask. 

A zebra with text "The zebra stripe ribbon for stiff person syndrome refers to training in medical school where they teach future doctors that "when you hear hoofbeats, think of horses not zebras!"
Please watch out for my zebra pictures on Twitter next week 
#Blogtober18

Keeping Well

It’s not been the best of time for me health wise, after catching the kid’s sickness bug I seem to have been knocked off my feet, almost literally!

It’s made me think a lot about my illness and how it’s progressing. I don’t like it, and I don’t like my family seeing me like it either.

This is not my usual state of mind. I probably get on a lot of people’s nerves but I’m really a ‘cup half full’ type of person. It’s strange really when my life hasn’t really strolled along the easy path, it’s definitely been a slow mountain climb with lots of crumbling rocks on the way.

Maybe that’s why I’m a positive thinking person. If I focus on the negative then I’d probably be a very depressed person right now. That doesn’t mean that I’ve never suffered depression, I have quite a few times, but these days I am well aware of the warning signs and I know the best ways to keep it at bay.

So, what have I been up to this week?

Well, I’ve got a new hobby! I have always been interested in papercraft but I’ve never been the arty type. I’ve decided that I’ll give it a go though and I’m making some cards. I’m using my favourite resource, Pinterest, to get some inspiration and I’ve been buying some bits and pieces to get me started. Okay, I know you don’t absolutely need a die cutter for starters, but I couldn’t resist treating myself to one.

Here’s my first attempt.

 

I’ve even ordered myself a cabinet to keep my bits and pieces in. With this and my crochet I’m going to be keeping very busy.

Talking about crochet, here is my latest creation.

 

The request for these keep coming so I can see myself making more. I’m also working on a big blanket with a CAL (crochet along) but that’s a year long project. I am loving it already though and can’t wait for the finished product. I can’t decide whether I prefer big projects or little ones. Last night I spent about an hour crocheting this jammy dodger tape measure cover.

 

I think now you may be able to see how I cope with my illness…I occupy my brain and my hands 🙂

 

Debs Random Writings

Don’t Look Forward, Look Back!

Don’t look forward, look back. Now, that is not my normal advice. For every step of life you shouldn’t dwell on the past but on the future. Keep on striving for what you want, there is always room for improvement and you have to make the best of your time on this planet.

In my own case, why should I look back on the past where I could walk and do so many things I can no longer do. I should look forward, think of how I can heal, think of how I can be better again.

But in this case I’m looking back, simply as a time scale. You see, at the moment I feel like I’m stuck in a 70 year old body, the pain, the immobility, the inability to live a normal life. I’m not 70 though, I have 18 years to go until I am 70. But 18 years doesn’t sound a lot does it, it will pass in a flash and if I even make it that long I’m going to be feeling 70 for a very long time. I look at friends and peers and think that they don’t look so aged as me, they are still enjoying life to the full, still working, still having fabulous holidays, still doing all the things they did before and even more because their kids are all grown up (or growing up quickly.)

So, I’m looking back.
Let me see, 18 years ago I was a single parent of two youngish children. I was working full time and juggling everything a single mum does. I was trying to date, whenever I could get  a babysitter that was. Then my world exploded, exactly 18 years ago, and I almost lost everything including my sanity. I did lose my job and almost lost my home, I certainly lost my family apart from my two children and one of my brothers. It was a very low time for me indeed.

Then over the next two years I began to build things up again, I met my current husband, we started enjoying life again. I went on to have three more wonderful children and we moved from a very crowded small house to the lovely big house we have now. We built up to a stable and happy family life. Yes, we had our ups and downs but doesn’t everyone? 18 years ago I was rock bottom, but now it seems like a lifetime ago.

It only took me two years to get out of that awful place I was in 18 years ago. If I can improve my health and my life in the next two years then I will have plenty of time to carry on enjoying my life before I become a 70 year old in a 70 year old’s body. In fact, there are many of 70 year old’s and even older having a good life.

I’m going to fight this, I’m going to fight for a better life.
I know what I have to do and I’m going for it.
I’m not waiting for my miracle to happen, I’m going to make it happen.

I’m looking back because 18 years ago life was shit and I made it so much better.
I’m looking forward because I can feel 70 in 18 years, I’m not going to give in to feeling it now.

 

School Runs and Shopping Trolleys
Debs Random Writings
Naptime Natter
Monday Stumble Linky

Keep on Hoping, Keep on Wishing but Most of all Keep on Believing

Last week I went to A&E because I really thought there was something wrong with  my heart. It felt like someone was sitting on my chest, crushing me and making it hard for me to breathe. I called my GP but I was told to go straight to A&E. I was given a red card on entry which meant I was seen straight away. They put me on a ECG monitor and checked me over. Then I was to wait to see a Doctor. As I was waiting over two hours I figured that they’d worked out that I was not having a heart attack.

I saw the Doctor and after lots of questions and further examination, and a consult with someone higher up the decision was that my pain was due to my condition, Stiff Person Syndrome. There was nothing they could do for me and I had to see my consultant for treatment. They couldn’t contact my consultant so that’s up to me, but I have an appointment in two weeks so I’m not sure they will see me any sooner.

For now I just have to deal with it an accept that this pain is yet another one I am going to have to get used to.

I also have been getting pain in my arms and hands, getting dressed has been really awkward. Again, I’ve been told it’s due to my SPS which is progressing. I was affected from my waist down, now it’s from my neck down. No, from my head down because I also get triginemal neuralgia which is another symptom of SPS and affects my face.

My first reaction to the news was to panic. I sobbed. I don’t want it to progress so soon, I knew it would eventually but it’s not even been two years yet. A lot of people with my condition (which is not a lot really because it’s so rare) have died within three years. The positive side to this news (for me anyway) was that they were not diagnosed in time and did not receive the right treatment. I’m extremely lucky to have been diagnosed so quick, and there are treatments available, so I’m still hopeful. What I am worried about it my consultants lack of concern, he didn’t even follow up to see how my last treatment (in June) went. I’m going to have to be firm with him when I see him next. I can no longer wait six months between appointments, if he’s too busy to fit me in then I will see someone else.

So after my self pity, (I really don’t want to lose my hands and arms, if my legs don’t want to get better I’ll deal with that but I can’t lose my upper limbs, I just can’t) I’ve decided that I’m going to bring out my fighting spirit. I’ve researched all the treatments that might work and I want to try them until I find one that does work. Of course, I would have to get the rarest form of an extremely rare condition, which means my consultant will have fight for the treatments, but I’m determined not to give in.

I also need to be pro-active. I have let my diet slip again and I do get lazy. Activity causes me pain, but if it’s the only way to keep my body doing what I want it to do then I need to be more active. I will walk more, I’m thinking of getting some of those comfortable crutches that support the arm so they don’t feel all the stress of holding me up. I have a friend who is great with alternative medication and although she’s been having a rough time this year with her own issues, I think she’s ready to start advising me again now. I am also in contact with other sufferers which helps a lot.

Sometimes I think that, you, my readers, get fed up of me harping on about my condition. But, this is my place and sometimes I just need to share. It makes me feel better, writing things down can be so cathartic and sharing my story may help someone else in the future. I know that reading another sufferers story as helped me, she’s into her 16th year and it’s been really rough for her, but now she has found the right treatment that works for her and is enjoying life again.

Just a couple of weeks ago my wish would have been to walk again. Now, that’s just a dream, a bonus. My wish now is that I can stop this condition from continuing it’s progression.

One thing is for sure, I won’t give up. I haven’t tried half the treatments that are available yet, and as much as I despise the thought of being on medication for the rest of my life, if it gives me more life then I will take it. I have children who need me. My husband needs me. And I don’t want them to be my carers I want to be the best I can and the only way to do that is to fight this illness and not let it get the better of me. It won’t win, I will! 
School Runs and Shopping Trolleys

Debs Random Writings


Photo by crabtree on Unsplash
Photo by Alex Cagwin on Unsplash

Word of the Week – Blurry

This week seems to have passed in a blur, you know, one of those weeks when you have no idea what day of the week it actually is. I didn’t even realise it was Friday this morning, so I’m writing this post last minute.

Monday we did the food shopping with the kids in tow. Not one of my brightest ideas I admit. I find shopping totally exhausting and the kids find it boring, so it was a recipe for disaster. However, I’d already done half the shopping online so we could skip several aisles and I had reward vouchers that I gave to the kids to spend.

So we set off to our local huge supermarket. The kids chose their gifts pretty quickly, and then we were off. I just wanted to select the fresh produce myself for a change, so our aim was fruit and veg, meat and fish and fresh bread. Of course the kids had to have cakes too. We didn’t do too badly, until I came to the checkout. I had a budget, seeing as I’d already done half the shopping online. I nearly died when the tiller asked for nearly twice as much as my budget!! I’m not going to the supermarket again!

My hubby Graham has been spending a couple of days this week helping my brother and sister-in-law with their house move so he’s not been around so much. The kids have spent more time on screens that I would like, but I’ve not had the energy to do much with them. I guess that’s why one day has blurred into another.

We did venture out again on Wednesday, to the clinic for Star. We watched a rather informative You Tube video called ‘The Poo In You,” go on, check it out if you have five minutes. Anyway, the bad news is that Star still has a big problem and we still have a program to stick to, which we are hoping will help.

That’s two days out this week, so Thursday left me exhausted and I also felt ill. The smallest illness can have the most drastic effect on my body and the kids have had colds this week so I guess they’ve passed the germs on to me. Yesterday I spent a lot of time in bed.

Last night was the worst I’ve had in a long time for spasms but thankfully I didn’t fall out of bed. I’m just glad that I finally got through to my consultants secretary this week and managed to get an earlier appointment. My appointment was in October, now it’s in September.

Also, this week, I’ve managed to spruce up my kitchen with some new items, including a new toaster which is much nicer than the last, and I’ve read a book. My week may seem a little tame in comparison with others but I think I’ve achieved a lot despite being ill. (More than usual) It’s the illness that’s blurred one day into the other.

The Reading Residence

A little Note About Positive Reviews on Raisie Bay

A little Note About Positive Reviews on Raisie Bay

Some people only write reviews when things go wrong with products, which is good because it lets people know that there could be potential problems. I’ve also seen negative feedback with say things like, I had to return this item because the colour did not suit me…is this useful?

I write reviews on most items I buy because I like to give genuine feedback. If I have a genuine problem with a product I will write my review in the appropriate place.

I write reviews on my blog too, but they are mostly positive. Why? Because I only write reviews for the things I’ve loved. If I don’t love them I let the person who sent me them know with details why and then let them decided if they would rather me write a negative review or not write one at all. It’s always the latter.

This is my blog, my place and I’ll let you know about the things I love. If you want to find out what other people have hated about the product then you will need to look elsewhere.

My reviews may all be positive, but they are still genuine.