As a slight forward. I continue to be amazed by the response my blog has been getting. People have been so interested I thought it might be interesting to get someone else to post on here. This is the chap who I mentioned got diagnosed with MS 8 months ago and he has written a post about how that went for him. This should hopefully be interesting for other people in the same situation and anyone with an interest in the symptoms/feelings of the condition. More from me next week when I have information on my second opinion.
The title wasn’t my first reaction; my first was absolute relief, which I suspect isn’t that common for someone that has been diagnosed with Multiple Sclerosis (MS), as I have. But I do seem to remember that thought kicking in a little later into the experience a number of times. It is all part of a very similar journey for most that have had a life changing bit of news, and like Marcus I think it’s worth sharing with the world.
Marcus’s ‘bit of news’ whilst very different, has drawn so many parallels to my ‘bit of news’ that when we catch up, there’s a constant murmuring of “yeah I know” between us as we chat about our experiences. So here’s a little bit about my series of unfortunate events. The things I wished I hadn’t done, the things I’m glad I did and the things to this day which remain a mystery but I’m sure will become evident to me in years to come.
To begin with, how can a diagnosis of MS be a relief? Well, MS isn’t a straightforward diagnosis. Early symptoms are easily confused with day-to-day aches and pains and general weird feelings that we typically brush off, unless of course you’re a raging hypochondriac. So for me, getting slight pins and needles sensations and slight strange feelings in the side of my head were no major cause for concern. Remember at this stage, I really did believe I’m a bulletproof version of Peter Pan. But as is the nature of MS, some of these sensations do not go away. Some do, but you get other strange feelings in various different areas that are a little out of the ordinary. It was when I lost all sensation in the side of my jaw and had bad headaches for over a week or two that I thought something was actually wrong. I went to the GP, who, after a lot of questions and head scratching, decided it was best I went for an MRI scan.
That was the start of the near debilitating condition (of which I’m sure there’s a name) where people fill gaps in ther knowledge with the worst possible scenario. So without any investigative research, and armed with a tiny bit of information, I decided I had a brain tumor. What else could it be? I had also decided that after extensive surgery, I was going to die within two years.
When I got the results for the MRI scan translated by my GP shortly afterwards (there were some really big words), he strongly hinted towards me having MS. He could only strongly hint as GPs can’t officially diagnose MS, it has to be a neurologist. But as you can see, suddenly the world seemed a brighter place considering I had only given myself two years to live …. at most.
A quick read up on MS and a very short period in what is called ‘limbo land’ ensued. Thankfully the neurologist, given his experience, understood the difficulties that can come from this stage and was quick to give the official diagnosis (kick in the kernels number one). From that moment, as a MS sufferer, you’re effectively assigned a team of brilliant specialists that have seen this all before and areon hand to answer anything you need answering.
But hold on a minute. I’m a bulletproof Peter Pan don’t you know?!? I’m not having this! I haven’t so much as had a cold for longer than I can remember! That’s it, I decided, I’m going to be the first person to beat this damned thing. Right, what do I need to do ……. ?
Take stock of the situation, that’s what you need to do. But I didn’t really know that at the time as there wasn’t a manual for this, and it’s something Google doesn’t know the answer to. Not that I was interested in what other people had done … I was doing this my way.
There were only two people that I thought would help me straight away, my partner and my brother. I told them straight away as I needed someone to know, I couldn’t just take this on all by myself.
Big mistake! Now I had two people completely spooked, asking loads of questions, making wild assumptions and loading all of that pressure back on to me (kick in the kernels number two). So the very two people I told in order to help me needed help themselves. If I’d had my time again I would have got comfortable with the new situation, which I’m told this is referred to as ‘the new norm.’ That way I could have described it calmly and with a degree of authority and knowledge.
I quickly changed tactics from my earlier mistakes. I started sending the news to my closer friends in a catch up email. This worked well for a number of reasons. These people were detached enough to not get emotionally involved but close enough to write some really nice moral boosting messages back. The responses were brilliant, they really were. They gave me just what I needed. Moral support, a little bit a sympathy and all set in the ‘you can get over this’ context which gave me the reminder of what I was/am capable of. But there was a side effect. I was actually getting addicted to the nice messages coming back, to the point where I was starting to stretch out the message base further than what I had initially planned. I needed to stop as it was creating a distraction for me. In-between all of this, I told a few people face-to-face (Marcus being one of them).
Now it was time to go into overdrive monitoring my own body. If I was going to beat this, I needed to know what I was up against. Unfortunately, I couldn’t revert to the tried and untrusted search engine Google, as everyone’s symptoms are different (did I mention that you don’t get a prognosis? Well you’re told to wait and see what happens), so I had to figure it out myself. Enter into the story a Mr. Keith Flint. For those of you a similar age to me, you’ll remember the song Breathe, by The Prodigy. In the song was the line ‘psychosomatic, addict, insane’. In our youth, nobody had ever heard the word before let alone knew what it meant. Thousands must have reached for the dictionary and surfaced none the wiser. Only now do I know what it means, having experienced it first-hand …. I think.
I knew I had MS, so now I had to go looking for the symptoms. Well, the body has this great way of actually making you display the symptoms you’re looking for. Excellent isn’t it? The process of psychosomatic disorder can actually create, or make worse, a physical disease. As a result of this, I didn’t know whether I actually had the symptoms or whether I was unknowingly making my body display the symptoms (kick in the kernels number three). I decided the amazing spreadsheet I had put together logging sensations for every part of my body (with rather good quantitative and qualitative methods) was consigned to the recycle bin. There was no point; I just had to get on with it, and if I noticed something really stand out, inform my MS nurse.
We’re about six months post diagnosis into the story by now and my parents still don’t know, or anyone else in my family for that matter. I know they were going to have to find out at some point, but my mother is a known worrier to say the least, so I was hoping to put it off. My brother and partner were encouraging me to tell her seeing as my brother’s wedding was coming up and we didn’t want someone to say something accidentally and for her to find out there. So I told her ……
What I’ve found is, the level of regret you have from telling the person is directly proportional to how close the person is to you in your life, and I don’t mean physically at the time of which you actually tell them. She is still recovering from the news (kick in the kernels number four) and drastically missing the role she has to play in all of this, as it is with everyone else. For anyone that knows someone in similar position to Marcus and I (and I’m speaking for Marcus here so I hope I’m reflecting his view too) (Pretty close – Marcus), the best thing you can do is to be subtly supportive and carry on as if nothing has changed. If I/we want to talk about it, we will, but it’s on my/our terms. The worst thing you can do is constantly remind the person of the situation by asking them how they are differently to how you would a person you know as being fit and well or by worrying about them. I know it’s natural to do so but stop it. It doesn’t help you and it doesn’t help us.
Rant (but very important message) over; now back to the story. Thankfully I had cushioned the blow with my mother by having practiced the news speech a few times and by being able to tell her everything she needed to know. If I hadn’t done that, goodness knows what position I’d be in now. Possibly not speaking to my mother now I think about it.
During all of this time I still have MS, which has its little way of reminding me that it’s there by slightly changing the symptoms every so often. Making a little change to my motor function here or having a little dig at my cognitive abilities there. Nothing drastic, just reminding me that we’re both together for the long haul. So it was quite a shock when my friendly auto-immune condition decided to get all nasty and stop my left leg from working. My leg was physically fine. It was sending signals to my brain saying ‘all good down here’ but my brain wasn’t getting the message quiet right, so when it sent something back telling it to move that was also getting a bit confused, my leg basically didn’t work as it was designed (kick in the kernels number five).
This wasn’t part of the plan. Whilst MS and I had a few spats with each other, we hadn’t had a major falling out, and the worst things was, despite all of the changes to my fitness, diet and mental state, this had still stopped me dead in my tracks. This deserved an emergency call to the MS nurse (which is the most unassuming title I’ve ever encountered given my experiences) that was quickly followed by my first batch of medication (kick in the kernels number six) to treat the inflammation in my cerebellum (the base part of the brain). The inflammation promptly receded with a slight residue that I can still feel today but this put me on the radar of the MS nurse and my neurologist.
They requested to see me very shortly after the relapse (the term given for when someone gets attacked by their own immune system intensely) during which they highlighted to me that it was in their professional I should consider medication. A few things to point out here a) There is no known cure for MS b) the prevention medication available isn’t consistent and doesn’t have a great likelihood of working at all c) I’m needle phobic (the medication is self-administered by needle) and d) until the relapse I was getting by just fine
So I was given the option, now that I meet the criteria, for a drug called Tysabri. This is administered monthly by infusion. Great for someone that has a phobia of needles. But the success rate is much higher and there are huge amounts of testimonials about how effective it is. As with everything so good, there’s a down side. In this instance it is something called progressive multifocal leukoencephalopathy (PML) which is a rare and fatal viral disease caused by the John Cunnigham (JC) virus (kick in the kernels seven). Great, so I’ve been given the equivalent of being able to see the end of the rainbow, only to have a really mean and hungry lion standing in the way.
These kind of choices are horrible. On the one hand I stand the risk of being on the receiving end of some nasty partly irreversible attacks from MS or significantly reduce the risk of those attacks but have the risk of dying from PML. Given that my strategy is to stay as unaffected by MS as long as possible until medical science advances enough to find a cure (which I’m confident isn’t far away) I have decided to take Tysabri and the inherent risks. As of the start of August 2013, I am awaiting my first infusion (that has been scheduled) that will bring on a whole host of new challenges I have no doubt.
The journey to date has been an emotional rollercoaster. There have been more reasons for that than I could write here, but given it’s a long piece as it is, I’ve tried to condense it, but I’m sure there will be more to come. Just when I think I know all there is to know, something comes along to put me back in my place. All of that said, there are worse conditions to have, and I recognise that regularly. So for anyone reading this, reading it from whatever perspective you have, be it someone new to a diagnosis, or someone close to someone that has been diagnosed with a life-long condition, there are decisions to make along the way, challenges to overcome and risks to take that can all be overcome with a positive state of mind.
The risk I’m not prepared to take is to tell the people that wouldn’t take this latest news too well, hence my name, for now (to avoid the eighth kick in the kernels), will have to remain under the pseudonym Nutt Case.
(this article contains nuts)