MS Awareness Week 2023 (Updated)

Press play to watch/listen to MS Awareness Week 2023 or scroll to continue reading.

https://youtu.be/AQkSOsEYBW8

I originally wrote this post in 2020 and looking at it now, I realise there are updates required.

To recognise MS Awareness Week 2023, I am sharing some of my symptoms below.

No two people with MS have the same symptoms. Those were the words that rang in my ears in light of my initial diagnosis with multiple sclerosis.

Memory Loss

My short-term memory was one of my very early signs. I can remember things from years ago but not what I did half an hour ago. I can be mid conversation and I completely forget what I am talking about. When we were kids, we used to get accused of lying if we forgot what we were saying. Nowadays, it’s just something my friends and family are used to, and ready themselves for reminding me what I am talking about.

My petrol usage in increased by me forgetting where I am going or forgetting directions to places. I have been hundreds of times. Setting off for the pub is one when I have regularly driven straight passed, no one knows this, only me. Oh, and you if you are reading this now?

I can plan a route, but unless someone sits next to me and tells me where I am going, I will forget.

Urine Retention

This is one where I am going to highlight the use of disabled toilet facilities and invisible illness while sharing what I have mentioned previously, the damage caused by the exposure of the nerves in your body. This results in weakness in my bladder nerves and the ability to hold urine in. Therefore, if I need to go, I need to go.

I do wear M&S high protection period pants all the time, though. I can highly recommend them as they just give me that confidence I sometimes need to go out of the door.

Lhermitte Sign

You will have heard people say “someone just walked over their grave”, but this is like a full-on electric shock through your body, it’s starts in my neck and runs down my spine. The first time it happened, it scared me to death. I couldn’t move. It happened in bed and at first, I thought I was in the middle of a sleep paralysis incident, which I have experienced previously because of anxiety.

But I couldn’t move, and I was stuck in one position as it passed through my body and ended up in my arms.

It has happened since, no warning and just sat watching TV. The only thing you can do is go with it.

Tremors

Anything that causes fatigue, sensitivities such as noise, heat, standing too long etc., raises my HR, exacerbates my symptoms. This can cause internal shaking in both my arms and legs.

Again, the first time this happened, it resulted in my losing the use of my arms and legs and having to be carried out of the DW stadium.

IBS

I have always put my IBS down to stress and diet, now it’s fatigue, when I am really can’t put one foot in front of the other tired. I either throw up or have diarrhoea.

After years of this and the pain which comes with it, they referred me to a colorectal surgeon and I now have a cream I use every day; they prescribe it for fissures, but it stops the painful spasming thankfully.

Pain

This can be neuropathic pain which sets off muscle aches, spasticity, pins and needs, numbness, joints locking or giving way, pain from electric shocks, MS Hug and other pain I get. My pain can go from 1-10 with the flick of a wrist or ankle.

Lesions

Lesions are found on either the brain or the spine or even both. I have both, oh lucky me. The inflammation that results from the immune system attacking the myelin sheath around the nerves causes them.

Eyesight

Back in 2013 when I had my first flare it was my eyes that went blurry and I couldn’t focus, now when I get really fatigued they are one of the first things I struggle with, my left eye starts to droop, which is attractive, I can’t see words on a screen in front of me, I can’t watch television I just have to sleep to recover. Also, having migraines with aura doesn’t help.

Spasticity

Have you ever woken up with cramp during the night, well times that by ten, when I say the pain is excruciating as someone who has lived with endometriosis, also had her gallbladder removed and a hysterectomy, I am not exaggerating, my leg locks from top to bottom, my arms lock, my fingers lock, my stomach locks, my neck locks and then there is the MS Hug which feels like someone is squeezing the life out of you, that feels like the worst heartburn you could have and it’s all down to my muscles going into spasm.

Cognitive Dysfunction

Also known as brain fog/cog fog. Before I was diagnosed, my attention span was getting shorter, I was struggling with decision making and as a born organiser I was not organising; I was seeing things in front of me and not recognising them. Spreadsheets that I had always excelled at, pardon the pun, I couldn’t decipher. I became unreliable because the information I was producing was wrong and I couldn’t see it.

Another symptom that is exacerbated by fatigue, I get to the stage when I can’t understand what is in front of me, reading line after line and not recognising what a chapter of a book is about, this is one of my most scary symptoms because I feel like I am losing my mind, up to now it has come back once I have rested but it makes me think there may be a time it won’t.

Lumbar Puncture

This is also called a spinal tap and is a diagnostic test for multiple sclerosis that removes a sample of cerebrospinal fluid. This is the fluid that surrounds the brain and spinal cord within the skull and backbone.

In 2013 I had this test and it came back positive for oligoclonal bands, this means the antibodies in my blood where high and destroying the myelin surrounding my nerves, myelin is the sheath that surrounds the nerves and it’s this getting destroyed which is a classic MS diagnosis, which my neurologist failed to share with me.

Emotional Problems

I was diagnosed with multiple sclerosis after being off work for a year and I missed both work and my friends/colleagues dearly. This brought on a sense of guilt that I was not meeting my obligations to my colleagues, company, and myself.

You could say it was a massive emotional roller coaster, but nothing prepared me for when I finally left work for good and the sense of loss I would feel.

Therapy helps, but I still grieve for losing work, my social life, and I still swallow down a lump in my throat at the thought of never swimming again. Watch this space.

You can read more of this here.

Relapsing

While I live with primary progressive not relapsing MS, I do still have flares, these are caused inevitably by fatigue and the signs start with high heart rate, low blood pressure, blurred vision, noise sensitivity and now it seems high blood pressure which started my last one in Christmas 2019.

Occupational Therapy

These were my lifeline before I was even diagnosed. I referred myself and a lovely nurse came to see me; she sorted me out a lifeline, an extra banister and a bath board and all were invaluable when I was in my house, they would have done more but the house was rented and wasn’t suitable for further alterations, don’t hesitate to self refer you will be surprised what help is out there if you ask.

Sensitivity

Regular readers, listeners, watchers will have seen me mention this many times as it’s something that really affects me, noise, smell, taste, you really wouldn’t believe that someone who used to go to rock concerts and rugby games now has to wear noise-cancelling headphones. Someone who loved sitting out in the sun is now sensitive to heat. I have always had sensitivities to smells as they give me a headache and things taste different depending on how fatigued I am.

Insomnia

I often take a long time to get to sleep then when I get to sleep I get woken up with spasticity, MS hug and just recently it’s been the Lhermittes Sign, and always to wee at least once during the night.

Speech

Many of you wouldn’t notice this unless you spend a lot of time in my company, but if I am out and about and tiring the first thing my Mum notices is my speech slows and eventually slurs and for someone that used to talk at 100 miles an hour it’s strange. People have picked it up on social media too, not always in a kind way.

Multiple Sclerosis in words

If you haven’t worked it out yet the above spells out multiple sclerosis but the largest enabler is fatigue, it really is the most debilitating part of this illness because of the knock-on effect it has and because no matter how much rest I get I still wake up feeling un-refreshed.

No magic diets, no CBD, no exercise, no pills or potions or any of the other suggestions that used to get thrown at me daily will help.

And finally, all the MS Charities have joined together to recognise MS Awareness Week 2023 and they are asking you to complete:

#MSMakesMe

#MSMakesMeProud – proud of what I have achieved since diagnosis and I haven’t even started.

What is your #MSMakesMe?

Please share with me in the comments, on social media or on my YouTube video.

Thanks for reading, listening, watching, until the next time.