Dizzy’s MS Alphabet!

It’s MS awareness week! And for the occasion Dizzy has come up with her own MS alphabet! Each letter in the words Multiple Sclerosis have been designated an emotion, symptom or feeling to do with living with MS (with a little about why we have picked each one 🙂 ). Dizzy is very proud of herself for coming up with one for every letter, especially when sclerosis includes 3 s’s! And would also love to know yours! Or if you have a different chronic illness, what would be your condition’s alphabet? 🙂 xxxx

Misdiagnosis – Before MS we were told we had an inner ear infection, trapped nerve, injured neck, possible vitamin deficiency and stress… Dizzy said by this point she really was feeling stressed! 🙂

Uhthoff’s Phenomenon – Hehe, Dizzy showing off her fancy vocab knowledge here! A term that refers to heat sensitivity, and an increase in symptoms because of it. This means Dizzy and I are always on a permanent mission to keep cool! But not too cool, because then that also causes  problems. 🙂

Lesions – These are the areas of damage on the central nervous system, where the immune system has decided to take a dislike to and attack. 

Treatments – One of the really positive things about having MS now, is the amount of treatments available and being constantly being discovered. Unfortunately, there is currently no cure or treatment that can reverse damage, but there are lots of drugs that can help to slow progression down. And hopefully one day there will even be a cure. 🙂 

Identity –  I think it’s hard not to think about who you are after a diagnosis, and it is something we often struggled with during our first couple of relapses. There were times when MS seemed to swallow everything up, and we didn’t even feel we knew who we were anymore. But luckily, as time progressed, we have found ourselves again. 🙂 Just with the added extra sprinkle of MS madness. 🙂

Progression – One of the scary MS words! MS is a progressive condition, which means a decline overtime is expected. But I always think it is super important to remember that everyone with MS is different, and although it’s easy to worry about the worst, there are lots of people out there who live perfectly normal lives with MS. 

Lumber Puncture – One of the diagnostic tests used to diagnose MS (and our least favourite!). It involves using a needle to take out a little bit of the fluid that surrounds your spinal cord. I would like to say we were brave that day… but we weren’t. 🙂 

Emotions – I think dealing with any chronic illness causes a lot of emotions, as it is really hard! We are definitely more emotional than we use to be, and definitely cry a lot more than we use too!

Sleepiness – The never ending sleepiness that comes with MS. 🙂 Sleepiness that loves to hang around all the time, and is one of the most common MS symptoms.  

Cog Fog – Or also known as Brain Fog. Where your brain feels foggy! This can range from not being able to concentrate or think clearly, forgetting words and having trouble keeping up with conversations. When Dizzy and I feel the fog descending, we know it’s time for a nap!   

Lhermitte’s Sign – This was one of our first symptoms (after the dizzies of course 🙂 ), and involves a shock like feeling throughout your body when you bend your neck. It is a very strange, but luckily only brief symptom., as the shock feeling is rather speedy. 

Experiences – One of the hardest things with MS, is all the experiences it can take from you. But it can also creates lots and lots and lots of new ones that you would never have even thought about! 🙂 We have met so many amazing people, that we would have never have otherwise met, and also had lots of doors open to us, that never would have without MS. 

Relapsing Remitting – This is the type I have and the one that most people (85%) will be initially diagnosed with. It means you have attacks of new symptoms or worsening of symptoms for longer than 24 hours. These are known as relapses. You then experience periods of remission where the symptoms can level out, improve or even disappear all together! Every relapse is different and no one can predict what symptoms you will have or how much recovery will take place afterwards.

Optic Neuritis – Another of the strange symptoms that can come with MS, and is often that first symptom that people with MS will develop. It can cause sight loss or just weird, random vision occurrences. With most people, this symptom will get better, as it did with Dizzy and I. It now only pops up when made grumpy by heat. 

Stress – Is a big one for Dizzy and I. Well more Anxiety, but there’s not A in Multiple Sclerosis! For us this got completely out of control after our first major relapse after diagnosis. I was feeling so scared all the time, to the point where I was having trouble breathing, experiencing heart palpitations all the time and not sleeping. It was horrible! And although anxiety is still with us, we have been able to get it to a more manageable level. 🙂 And it has taught us, that when you need help, ask for it! 

Immune system – The naughty culprit of all these things. I still don’t understand how one day it can be best friends with my central nervous system and the next decide it looks like a dodgy intruder, who needs to be destroyed, but that is one of the mysteries of MS! 🙂 I do have a quiet word and tell it to stop this nonsense now, but it seems to be even more stubborn than I am! 🙂 

Strength – I never really see myself as a strong person (Dizzy always sees herself as a strong donkey!). But if someone had told me about my MS adventures before they began, I would have been very sure that I would not be strong enough to live with a chronic condition. So the fact that I am doing it, maybe shows I am a little stronger than I always think, and can cope with things that I never thought I would be able too. 🙂