A little seasonal rant…

One of the final dialogues in the 3rd Night at the Museum movie, always makes me think. Larry the Nightguard says to Theodore Roosevelt “I don’t know what I’m going to do tomorrow!” Teddy replies “How exciting!!”

Not everything has to be planned to the final second. Sometimes, a bit of uncertainty can be liberating. Perhaps we have all got a little too used to planning our time to the Nth degree and panicking when it does not all quite go accordingly. My plan for today, for example, went belly up when I fell back asleep after my alarm went off. I didn’t plan that. It threw me for most of the rest of the day because I couldn’t then persuade myself to start on all the things I’d planned to do. I ended up actually completely wasting my time doing nothing. I flapped and I let a small thing like sleeping in, mess with me for the rest of the day. Actually, it would only truly impact me for about an hour. The rest of the waste was caused by my reaction to even a minor detour from the plan! Ridiculous.

Yet, I need some structure. If I didn’t have at least an idea of what I’m going to be doing, and when, I’d truly never get anything done. And so it is, I find myself at 1.05am, trying to plan the rest of my life. Just tomorrow isn’t good enough for me. I like to make grand sweeping plans, so I can beat myself up when I don’t achieve them. This breaking goals down into actions shit, just doesn’t seem to happen for me!

I find myself in a situation whereby my home is falling apart, my body is falling apart and my mind is just blown. I can’t seem to see past my daily struggles and they’re getting pretty overwhelming for me. I don’t know how much of that is down to me being in all-out panic mode and how much of it actually is something I should absolutely be concerned about. I don’t want to talk to anyone in case I find out something else I don’t want to know. I answered the phone today to hear that my critical illness claim (you know, the one that is going to help me manage my future with MS) is certainly not going to pay out the amount I claimed for (and am insured for) because of small print and technicalities. I don’t know for certain yet that it will be paid at all. My GP surgery only sent my notes for this past year, the insurance firm wants to go back a little further and that apparently means they are waiting for the surgery to send on another 70 pages of my medical records. (Bet they’re glad they requested another 6 months worth now eh!)

The work on my flat to try to fix the dry rot is now scheduled for January. I have to move out with my kitties so the work can happen. I’m hoping to go and stay in a cottage far away with a good friend, a crate of wine and a log fire. I truly need that distance from reality right now. The past 12 months of my life have been far too real for my liking and I stick by what I wailed at my brother a few weeks ago – I can’t take any more. I cried a lot today. Now, I know that this time of year, in general, is pretty difficult for me. All the good cheer and festive fun, just makes me feel more depressed. Several aspects to that. First, it just brings into stark contrast the total lack of fun in my life right now. Secondly, I’ve never been a fan of this season. Thirdly, it’s all just a bit too wild and raucous for me in my middle-age! I really am turning into a pretty grumpy old(er) lady. I can’t really tell you when all these seasonal feelings started. I can’t really remember the last time in adulthood at least that I truly, out-and-out, thoroughly enjoyed Christmas. It just seems like the same stress as for the rest of the year, except its much more expensive and failure to provide the perfect present is simply not an option.

Due to unfortunate circumstances, Christmas Day, this year, was held on Boxing Day. That just served to prolong my agony. I just want it all to be over. In fact, I want it to be February. By then, the silly season is over, I should know the true extent of my poverty and I can berate myself about the plans I made at 1.05am being utterly inadequate for my position. Then I can make new plans, that I won’t stick to and I can repeat the cycle all over again. I find myself wondering when I will get off the hamster wheel and take action, rather than just talk and plan for it!!

Rant over.


What’s the difference?

I’ve always tried to be open and honest about my epilepsy and how it affects me and therefore, potentially you. There are several reasons for this, the main one I admit is for a selfish reason – it is better for me if you know that I have epilepsy and so if you see me having a seizure you are less likely to panic as you know its “normal” for me. Secondly, I always offer to talk about the disease, the effect it has on me, my family and my friends; this, I believe, helps to raise awareness and go some way toward dispelling the stigma that unfortunately still surrounds the disease. I’ve talked about my own experience with stigma before (Epilepsy and Stigma…) so I won’t labour the points here, but it saddens me that it is still something that we have to cope with along with everything else. I also, selfishly again, like people to know that a diagnosis of epilepsy doesn’t have to be the end of the world. Although, I admit, sometimes it can feel that way.

Often, one of the first pieces of information a newly-diagnosed epileptic (yes, I know that in this modern world “epileptic” is a label that we shouldn’t use, but as far as I’m concerned I am epileptic, in the same way, that I am brunette and that I am green-eyed. It’s a descriptor in my book and not a bad word) is given, is a list of the things they can no longer do. Driving, swimming, diving, etc. Few, in my experience anyway, are given a list of things they can do. I like to believe that this is because the list of cans far far outweighs the list of can’ts. Even then, what we are told we can’t do is often a slight misnomer. For example. I was told I couldn’t swim anymore. I virtually lived in the pool. I swam every day for my club, I also was a regular high board diver. Being told that I could no longer go to the pool was devastating to me. And, it wasn’t true. I emphasise here, that there are many people who suffer far worse than me from their seizures and for them, perhaps, it isn’t safe. What I wasn’t told, was that providing I was accompanied by someone who knew of my condition and how to help me and that I informed the lifeguards on duty, then there was no reason why I couldn’t continue to swim. I did lose my driving licence and I’ve never been able to get it back. This is because my seizures can be unpredictable and while I have gone the required 12 months (it used to be 24) and so I could apply to have it reinstated, it would not happen as I can’t demonstrate that I am controlled and my GP would not sign it off. I think I miss the freedom that being able to drive would bring on so many levels, however, I balance this with the knowledge that I will never cause an accident through having a fit at the wheel and so potentially ruin another life.

Telling people I have epilepsy usually elicits two responses. The first, the most common, is that there is simply no acknowledgement of the information. That’s totally fine with me. I recognise that while I’m comfortable talking about it, others perhaps aren’t and for a myriad of reasons. The second response, is generally, “thanks for telling me that, it’s useful to know. Perhaps you can tell me about it?” Yet, what I only very occasionally hear, is “I have a friend with epilepsy” or “my xx has epilepsy”. In the 20 years or so that I’ve been extremely open about my disease, I can count on one hand the number of times that response has come. My experience sharing my MS diagnosis has been vastly different.

Telling people I have been diagnosed with MS has been a completely different kettle of fish, to announcing I have epilepsy. Firstly, it took so long to get a diagnosis, that I couldn’t tell people what was wrong, all I could give them was a range of afflictions of varying severity that it could be. The medical debate as to whether my optic nerve issues are MS or something else still rages on, but for the purposes of this post (and my mental well-being) let us pretend that it’s all MS related.

The initial similarities between the reaction to the MS diagnosis and the one for Epilepsy are actually pretty similar. Although, I guess that’s not really much of a surprise. Shock, terror, panic, tears etc were all present on both occasions in the early months following diagnosis. My lack of knowledge about both diseases was a factor. Epilepsy when I was 17 simply wasn’t discussed, I didn’t have Google (this was 1988 people) and I dealt with everything by internalising it. If I didn’t acknowledge it, it wasn’t happening. The classic, as my brother often describes it, sticking your head in the sand and hence leaving your ass exposed. I knew nothing at all about epilepsy and my knowledge of MS started and ended with horror stories, Jacqueline du Pre’s death springs to mind as being the only real story I knew of where MS was the destruction of her career and life. She was younger than I am now when she died. The only other exposure I had to MS was hearing about other tragic stories in the media. So my complete lack of any factual knowledge of either disease was total. As an adult, I think that I dealt with my MS diagnosis in a bit more of a mature way. At 17 I didn’t know what to ask and of who. Being as I’d basically shut down, then chances are I wasn’t going to ask anyway, but perhaps if I’d been pointed in the direction of a support group, then it may have changed things for me. Who knows? At 45, I asked questions. Sometimes, I didn’t get answers, sometimes I didn’t want to hear the answers, but ultimately, I had/have to face up to the facts as they present themselves.

When I did start to tell people I had MS, it usually elicits two responses. The first is along the lines of “oh shit” or “chr*st” or words to that effect. These responders are generally the ones that had the same negative exposure to MS that I’d had. The other typical response was a complete surprise to me. It’s along the lines of “my xx has MS” or “I have MS too” or “I know a couple of people with MS”. I did not expect this. Perhaps I was vain to think I was the only one!! It’s estimated that about 100,000 people have MS in the UK in 2016, while the figure for epilepsy is 500,000. It’s mainly for that reason that I was so surprised just how many people who I know and see regularly, have firsthand experience of living with MS or know someone who does. Given there are 5-times as many people with epilepsy than with MS, I’d have thought I’d know more people with exposure to epilepsy.

Does this mean anything? Does it mean there is less stigma attached to MS and so people are more likely to admit they either have the disease or know someone who does? Or does it mean that people with epilepsy are less likely to acknowledge their condition, especially if it’s well controlled? I don’t know the answer. I find it fascinating though.

The first person to be “officially” diagnosed as having MS – albeit posthumously – was Augustus d’Este, the grandson of The Mad King, George III. Although he wasn’t diagnosed during his lifetime, the diaries that he kept detailing his symptoms allowed for the diagnosis to be made. He kept diaries of his condition for 22 years, with the final entry being made 2 years before his death in 1848. However, the disease can be traced back to the 14th century to Saint Lidwina of Schiedam Although she died in 1433, historical texts tell of difficulties in walking, pains in her teeth and terrible headaches. This gave rise to the probability she suffered from MS. However, epilepsy has been documented as far back as 400BC with Hippocrates, no less, dismissing epilepsy as being no more sacred than other diseases in response to the belief at the time that epilepsy or the falling sickness was some kind of supernatural affliction.

There are long lists of famous people who have lived or do live with epilepsy. Bonaparte, Julius Ceasar, Dostoyevsky, Alexander the Great, Lewis Carroll and Prince to name just a few. Yet, I can’t find a similar list stretching through the ages for MS. The lists for those suffering MS seems limited to those currently living with the disease or those, such as Ms du Pre who have passed relatively recently.

I find the differences and similarities between MS and Epilepsy absolutely fascinating. The stigmas, the discussions and the history of both diseases being a source of both wonderment and inspiration.