A Curly Hair, Chronic Illness & Lifestyle Blog - Writen By Charleigh Victory


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Seven months since my last attack.

It has been seven months since I had further damage to my brain and spinal chord. Seven months since I lost my eyesight for the second time and seven months since I temporarily lost the ability to walk freely.

So I guess you could say that I'm 7 months into remission.

Which is pretty good going considering I had 3 relapses in 7 months before.

However, I am not 7 months symptom free, in fact I experience symptoms near enough every single day.

And I know that this is how it's going to go though..

relapse, remission, relapse, remission etc. A never ending cycle.

I wrote a blog post here where I talk about the treatment that I had 5 months ago and the treatment that I'll be having again next April.

For the past 7 months, I have been focusing on how to manage my illness and pain, along with working as much as I can, trying to have a social life and spend time with my family. Unfortunately, my last relapses have left me with symptoms that aren't going to go away, such as pins and needles, extreme fatigue and weakness. I told my MS nurse last month that I felt like I hadn't got better since having the Lemtrada and her reply to me was "You won't. You won't feel better because it isn't a cure" and honestly I forget sometimes that this is probably as 'well' as I'm ever going to be. Which is quite scary to think about but at least for now, I am not getting any worse.

Multiple Sclerosis is quite a complex and hard disease to explain and I still sometimes get really confused as to whether I’m having a flare, a relapse or if the symptoms I’m having are even MS related at all. But I think I understand now that if I don’t experience any NEW symptoms, anything that I’ve never had before then it isn’t a relapse, it is just a flare. Although flares can sometimes be unbearable, it doesn’t mean that I’ve had any further damage to my brain/neck or spine.

Every day is a blessing for me. I always have anxiety about waking up in the morning and not being able to move but each day that I wake, I am just so unbelievably grateful that I'm able to see properly and move my legs & my arms. I see my nurse every 4 weeks, to have my urine sampled and blood's checked, just to make sure I haven't developed any of the nasty side effects to treatment OR developed an infection along the way. I am so happy that I am frequently monitored but I do always worry incase some of the results come back bad. I just don't want anymore bad news.

This summer, I have really felt the effects of heat and MS. I spent weeks and weeks in complete agony with my body and the hot weather was making it worse. I had sleepless nights, spasticity, electric shocks down my spine and just extreme fatigue that completely knocked me off my feet. So, to say that I'm happy we are transitioning into cooler weather, is an understatement. Although, I know I was diagnosed with MS last October, I still don't really know how I'm going to be in Winter. Just because last year, I was so poorly anyways that I'm not sure yet if the cold weather will effect me at all. But we'll cross that bridge when we get to it.

If all goes well and I do not relapse within the next few months of 2018, I won't need another brain MRI until next year, just before I go back into hospital for round 2 of Lemtrada. I'm looking forward to seeing if the lesions have gone down or even disappeared - that would be incredible.

So yeah, that is where I'm at right now. Still dealing with symptoms every single day, still feel like a 23 year old stuck in a 60 year olds body half the time but for now, I am stable and that was something I could only dream of 11 months ago.

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