For some people with MS, relapses can be a big part of their condition. In a recent blog, Elaine discusses the unpredictability of multiple sclerosis, including what it feels like to be in a relapse.
Imagine a treacle sponge. Think about all that golden syrup. Gooey, sticky and thick. Now imagine that you're actually in the treacle, stuck there. It's happened suddenly and you've no idea how to get out. Every movement is difficult. Just moving a hand takes a lot of effort and it's taken me an inordinately long time to write this blog. Welcome to a multiple sclerosis relapse...
There are about 130,000 people with MS in the UK but probably only a few of us would talk about being stuck in treacle. As I've said before, if you lined up 1,000 people with MS and asked them to tell you about their condition, they would all have a different story to tell, depending on which nerves are damaged. I can only tell you my story and I have a new chapter...
Relapsing remitting MS is how some of us get started - the condition worsens for a while then improves but often doesn't quite revert to where it was before the relapse. I followed this pattern for a few years then graduated to secondary progressive, which means the deterioration is ongoing (not necessarily very fast) but there are fewer relapses. So why am I in a relapse now?
There are several possible reasons. Neurologists ask if you've had a cold (no), upset stomach (no), getting too hot (possibly), an infection (no). "Have you been or are you feeling stressed?" Hmm, is there any reason why I should be stressed?
How about Freedom Day? In addition to MS, I am one of around half a million people in the UK who have a compromised or suppressed immune system and the science is not yet available to say how effective the vaccines are. One research study puts cover at between 28-35%.
Or perhaps the relapse is a reaction to the monster stress levels I struggled with at the abortive liver transplant assessment. Top stress triggers are death, divorce and moving house but I would like to add being assessed for a liver transplant into the top ten!
On the other hand, it could just have been the football.
I've also just reached 30 years since my MS diagnosis which is reason enough for the MS to want to show-off for a while. MS considers itself a very important illness. Otherwise, why would it have so many symptoms and posh names for them? I'm currently not able to speak without slurring my words and, if I talk a lot, my mouth seizes up altogether. Posh term, dysarthria. Next is my problem in swallowing or dysphagia which means I have to be careful with certain substances that can stick in my throat, such as bread.
Next, let's talk about a common and more embarrassing MS symptom, the neurogenic bladder. A posh term for a bladder control problem. I currently have an ongoing pantomime with mine. I go to the toilet thinking I need to pee and then my bladder says, "Oh no you don't" and I have to wait for a while. Or it surprises me by peeing when I'm nowhere near a toilet.
Another symptom is fatigue. Fatigue is not the same as needing a senior citizens afternoon nap. It's the feeling that your personal power supply has drained away. For me, this passes after a period of time but for more than half of people with MS, it's a major concern.
Everything about MS is unpredictable so it isn't surprising that depression and anxiety are common. It isn't just in the person with MS, it's those close to them, their friends and family, who are also challenged by the illness. Perhaps it is because of this that so many will tell you, if asked, that "I'm fine" even when they're not. Most of the symptoms are invisible so it isn't too hard to put on a performance.
I follow a Facebook MS support group and I regularly see posts from people who are struggling to cope with all aspects of their MS. One post made me very sad. It was from someone who felt they were 'surviving not living' and seemed to be considering assisted dying. The question was asked (not for the first time) why we can put pets out of their suffering but not ourselves?
Do I ask myself if life is worth living? Yes. There have been times when I didn't want to end my life but I wanted to go to sleep and not wake up. Fortunately, these days it happens very rarely. I know that a positive mental attitude is essential to keep me going.
I know that life is not going to get any easier. I know that, due to the unpredictability of MS, we will sometimes make arrangements and have to cancel them but I also know that this MS relapse won't last forever.
