Some more frustrating red tape then…

So, I went to my GP today to find out whether I would be allowed to partake of a potential treatment for CFS. By treatment, I hasten to add, I do not mean cure. Of course that is still a long way away. But there is something out there that has been shown to give improvements in energy levels for people with CFS. These are B12 injections. Unfortunately, the ways of licensing in the medical world means that if Drs use a substance for anything other than the specific purpose for which it gained its license, said Dr would not be protected if anything went wrong with the treatment by way of side effects or anything like that. In principal, this makes perfect sense. You obviously don’t want people to be able to willy nilly give people things that could do them harm. However, this makes my life significantly more frustrating and difficult. 

I think it all comes back to the fact that CFS is still not recognised as the vast ranging, dibilitating syndrome that it is. For instance, I officially cannot get my flu jab for free because CFS is not in the list of conditions that causes a decreased immune syndrome, nor is it in the list of chronic illness that also qualifies one for a flu jab. I cannot begin to say how much this actually angers me. I think I have now gone past despair and disappointment and into full blown anger. It is bloody ridiculous. Especially when there are whole sections of the medical community who truely understand this condition and recognise it as something that needs further research and a focus on finding ways to help people live with CFS. I can’t imagine how frustrating and full of tenacity the lives of these researchers must be. Well actually, I probably can, it’s probably quite similar to mine in terms of trying to make people hear you. “Lazy lumps” we are not. Screw you guys. 

Anyway, back to the injections. I have been told that I have to try and get a prescription from the hospital where the clinic is based for these injections and then have them administered there (at least a 45 minute drive away as opposed to a 15minute walk) or get them to teach me how to do them myself. This is because, according to the prescription liason person at wandsworth council, the use of these injections for something they are not originally licensed for needs to come from the hospital and then it can move out from there. There are many treatments that are now commonplace which started out as licensed treatments for other things. One of them is something to do with asthma, but I’m afraid you’ll have to do your own research into that as I have been waiting at the drs for an hour for my appointment and so have been trying to read through this time and therefore my mental capacity for the day is now over! 

The long and the short of it is that, after waiting for 11years for at least something to help me maintain the lifestyle I want for myself alongside keeping my CFS at bay, I have finally come across something that could help. Only to be denied yet again. Hopefully through some more pushing and even more time, I will eventually be able to have something that will increase my general ability to live the life I want. Fingers crossed. 

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Wait…I have a Plan!

So, I haven’t written in a while, which is to be expected really when my mental capacity at the moment is about 30 minutes at a time. On the plus side, I think I have made a decision and I thought I would share it with you all. I have set myself the potential goal of going to New Zealand in Feburary next year to do a medical statistics postgraduate diploma at Auckland University. Obviously this is all extremely fluid as I have only done a small amount of research, but have so far gleaned that this medical statistics course is exactly what I have been looking for and that there is an accommodation option with a swimming pool! Bonus.

I have been thinking for some time now that I would like to be able to go on some sort of course to improve my statistics, but I wanted it to be specifically science related statistics, because this is what will make me a better scientist. My writing is up to scratch (I think!) and now if I can work on my numbers I will have nothing to worry about except the actual science.

It so happens that three of my best friends have either already or will shortly move to New Zealand, and I have always wanted to go there and live for a bit, before I went to Colombia I was seriously looking into potential Masters courses over there, but this was before I knew dementia was what I wanted to specialise in. Now I have a new plan to go there and study for a year, in my holidays hopefully be able to fit in holidays to Indonesia, Vietnam, Thailand and as much of that area as possible. Then, after I get my diploma (hopefully!) I plan to do an STA tour of South America, perhaps spending an extra few weeks at the end in Colombia. So that is my plan!

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Due to the fact that I might not get in to Auckland, I might not be well enough recovered from my current relapse to be able to go, or I can’t afford it, this may not happen. But I definitely feel better for having set a long term goal for myself. It’s something that gets me excited for the future and that is hard to come by sometimes with CFS. I’m trying not to look too far into the future, but to ignore it completely is also dangerous. I actually ended up getting a few other things done today that I have not brought myself to do for a while. I think making a positive step forward, even if it is just thinking about having a plan, brings up you slightly and allows you to increase ever so slightly.

I have been doing some wellness sessions on an app on my phone, but haven’t been exactly consistent with it as I did the first 10 then stopped. But I did find it helpful to be given images to put to your thoughts. Sometimes it can feel like they’re all just jumping around inside there, banging their sharp elbows on the folds of your brain, and the few meditation sessions I have done have helped calm them down. I was one of the people who dismissed meditation as something that I would never be able to do and that couldn’t possibly help, but I must say I think it is important for everyone, whoever they are, to at least honestly and genuinely try meditation. I think it may help a lot of people.

So, that’s me, I’m still waiting to start both Cognitive Behavourial Therapy and some Graded Exercise Therapy, so once they get rolling I will let you know how it goes. Also, sport is coming back! Ski Sunday is back and the six nations are starting soon! Life is good really.

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A random poem about time

Time is a myriad,

of things, it would seem

A healer, it has been said

Too short, running out, money, up

Or a blessing perhaps, on one’s head

Wibbley, wobbley, wimey stuff

Maybe we think about time too much,

in a way that makes it our enemy

Thinking of time

as a linear line

puts everything into it’s place.

But time is just time,

a few seconds and years,

the proof we are here to live.

Life is what we do with our time

When things occur,

in the seconds or years

matters nothing, so long as we’re happy.

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How I handled Silverstone and CFS

So I managed to make it to Silverstone for the Formula 1 race weekend! It has become a tradition for my Dad and I, we first went for my 21st birthday present and loved it so much we haven’t missed it since. We now buy our tickets for next year at the track, usually on the friday, so next years tickets are already in the bag!

I felt slightly guilty (for approximately half a day) about going when I’m not at work due to my relapse, but swiftly got over it as I think one of the most important things to do when you’re having a relapse is to enjoy yourself somehow. Life needs to resemble (resembles….butterfly!), if only slightly, normality.

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The legend that is Sir Stirling Moss driving around his classic Mercedes W196 on track

Of course, I had to manage my energy levels through the weekend. It also didn’t help that we’d just flown back from a holiday in Turks and Caicos (amazing, I’ll maybe write something else about that later), so I was roughly 5hrs behind the rest of the GMT+0 part of the world. However, on the plus side this meant I was so tired by the time we got back from the pit walk on Thursday that I fell straight to sleep that night and slept like a log. 🙂 The way I managed my CFS was basically to still do everything I wanted, ie. get all the way round the track and watch things from every good grandstand, as ascertained in previous years, watch for the best and most exciting drivers in the lower formulas to see the next f1 stars at their beginning and pick up a new mclaren shirt, a senna phone case and a bunch of cider and festival food along the way, oh and also, of course, see the red arrows display from the international pit straight. But, do it all a lot more steadily. Instead of walking around the full track almost every day, we did it once, all of friday and saw everything we wanted to see. Then we spent saturday on the section nearest the car park. Then sunday, well sunday you are pretty much glued to your seat all day with barely any time to even grab some lunch, so we didn’t move a lot that day. We also abstained from the Madness concert that was on the Thursday. I had seen them at Glastonbury in, I think, 2010, and they were awesome. So I decided I needed the sleep more!

Lewis waving at all his fans as the victor after the track invasion! Got pretty close hey?!

Lewis waving at all his fans as the victor after the track invasion! Got pretty close hey?!

It was one of the best years, not least because there was a British winner in the form of the irrepressible Lewis Hamilton (nice one buddy! #TeamLH), but also because of the atmosphere, the extra parachute and typhoon air displays we got this year, the punters we mixed with and of course the actual racing which was unreal this year. I got back home exhausted, but exhilarated as well. The power of doing something that gets you excited, that makes you enjoy yourself is incredible (and also very scientifically interesting from a psychological point of view I think!). I count myself very lucky that I enjoy watching sport so much, so I always have an easy go-to for cheering myself up (along with almost every Disney film that has ever been produced). Having endorphins running through you can be dangerous for CFS though, so you need to make sure you know your limits, and act conservatively with them. It also helps to have someone with you who knows you well and can see some danger signs that you might be subconsciously ignoring in order to do more. As powerful as the good feelings are, so are the bad. There is nothing worse than burning yourself out half way through an event like this.

I am off to Shambala festival at the end of August, so will be using some of the same tactics, although as there is a bigger group of us going, this may be harder to do! However, I will prepare by resting as much as possible in the weeks leading up to it. I am in fact going to spend a lot of august lying on the sofa and cuddling my dog. Which isn’t all bad really 🙂

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Started as just a Rant to myself, but now I think I will share it will you all.

Ok, so I wrote this with only myself in mind, so I have put in a lot of personal stuff, which I am still not entirely certain that I want to put onto the world wide web, but hopefully it will be a good move. It is going to be a long read and there aren’t many pictures I can add to break it up either, so sorry about that!

When I am having a relapse, I hate my life. I am so bored, so lonely, so frustrated and so empty. I lie on the sofa, watching mind numbing, no brainer tv because this is all I can handle. If I watch a film I can’t follow the plot line, if I watch some episodes of a programme I enjoy, I forget what has happened before. I can’t concentrate long enough to read a book, and my eyes won’t be able to focus for more than half an hour anyway before the cilliary muscles give up. I have played games on my phone, but a lot of the time I can’t even summon the strength to hold my phone up. In short, all I am able to do is lie on the sofa watching random images to prevent myself going completely mad with boredom.

All I want to do is go to my perfect job , work really hard on a subject I am passionate about and love, then enjoy myself with my friends. But this is a thing my CFS will not allow me to do. I am not used to letting something stop me from achieving things. I am not used to having to do less than my best. I hate it. I hate it, I hate it, I hate it. It is like a kill all switch goes off inside and everything starts to shut down. First my muscles, then my joints, then my brain. My concentration span is reduced to that of a knat and my swimming-loving body is made into an invalid. How can I be at war with myself, how can my own body betray me like this. I know it is not my fault, but what if it is? What if this was caused by something I did or didn’t do when I was younger? But then, I was diagnosed at 15 and I don’t think I would want to have done anything in my 0-14 years on this earth any differently anyway. So this point is pointless to think about.

To be honest, I have written this much and I have already lost my trail of thought. I can’t remember what I was going to say, I can’t think about what I should write next, what would flow best to describe now. All I can think is, well, expletive this expletive. My eyes have lost their focus now, so I am not sure if this is written correctly, but perhaps I can go back and spell check later when I have had some sleep. Not that that will happen any time soon, because the irony of all ironies that comes with this bastard fatigue syndrome is that I also have insomnia. I have spent the last month of this current relapse going to bed at, latest, 10 o’clock and very often earlier, but not falling asleep until, on average, 3am. So I lie in bed, tossing and turning and completely awake, but exhausted. Muscles and joints aching painfully and working so hard to prevent hatred from coursing through me.

I need to get back to work, I miss it. I miss my colleagues and friends, I miss my commute, my office, using my access card, having lunch, especially the actual work itself. The awkward thing is that when I was a competitive swimmer I used to say “I can’t” a lot. A lot. I am a very insecure person, and I believe I used it as a defence mechanism, where if people weren’t expecting me to do well then I couldn’t disappoint them. I also loved surprising people, I loved proving people wrong. I was not the most athletically built swimmer, I was nicknamed “Mrs Blobby” by my coach whenever I came back from boarding school in the holidays. But I trained hard and I loved it and I am fiercely competitive. I beat people and that surprised them and I loved it. Now that is biting me in the arse. Because now, I actually, physically, can’t. But people are so used to me saying this, but doing it anyway that they think this is the same. That I am just being lazy, that I could do it if I really worked hard and pushed myself, powered through, DID something. But I just can’t. I hate that I can’t. I would love nothing more, but I can no longer surprise people other than by being a failure and not doing what I mean to do, what I have said I would. If I had one wish in the whole world, it would not be riches or brains, or even love. It would be no more cfs. But this is not possible, there is no cure, there is not even any form of treatment. So I have to deal with it, I have to be strong in my mind, because my body cannot be and other people often make it worse, without meaning to, but they still do. The parts of my brain involved in my knowledge, my calculations, my analysis, my science may not work at the moment (this is an important phrase to remember “at the moment”), but my consciousness still does. My mind can still be rational, I can still speak, I am still aware of what is happening to me and therefore it is important, of the utmost importance, that I keep this positive.

I have suffered from depression before, when I was beginning university I had a group of friends, who weren’t really friends at all and made it worse rather than better, made me feel guilty and lazy and worthless. I self harmed and I reached out for help to a good friend, who rejected me again and chose not to help. It was of course more complicated than that, but at the time I didn’t care about his reasoning, it was just another blow, and the worst one yet. We are still friends, but I still keep reserved around him, without meaning to or realising sometimes. I cannot allow myself to go back to that state again, I must survive. I must not merely survive, I must live. I cannot do that if I let my mind slide back into depression. I may be alive, but I won’t be living, I won’t be enjoying the world, the people in idance in the raint and the opportunities there are to explore. People who have had depression will recognise that it is a constant battle of wits against yourself. You are never completely free from it. Whenever something depressing happens in your life, you have to fight and fight very, very hard to keep your mind above that threshold. It is the same with cfs, and why people who have cfs very often get depression as well, for funsies, because cfs obviously isn’t enough. Your whole life changes, you have to stop doing things you love, that make you, you. You have to redefine yourself.

One of the most frustrating things about this illness is that it has only recently been properly recognised as a legitimate illness. Only recently have people started to be believed that they are not making it up, or trying to get out of doing things because they are lazy arses. This means that we are only starting to come up with a basic tool in order to scratch the surface of the mechanisms of how and why it occurs, why does it occur in some people and not others who are doing exactly the same things. For more information about the current research going on in the cfs world have a gander at these sites:

http://www.meassociation.org.uk/news-too/

http://www.meresearch.org.uk/

Hopefully these wonderful people will begin to piece together what it is that is happening in the cfs body, be it brain, blood, protein, DNA or hormones processes, we just don’t know yet, so we have to look at everything. This means it will probably take a long time, but we just need one breakthrough to give us an area to focus on. I hope this will happen in time for me. I am not sure how I am supposed to be  a scientist, swim the length of the channel, travel the world or in the future become a wife, a mother if I cannot control this.

I didn’t write this originally to be read by other people, I wrote it because I was feeling particularly pissed off and the thought came to me to just type it out. Just type it out. It has helped I think, I feel less pissed off anyway. But if there are now people reading this, then I hope you have found it illuminating, and not bitching or whining, but simply stating fact. If you would like to know what the best thing is to say to people with cfs, I’m afraid I can’t help you, it’s different for everyone. What I can say is that please, believe us. Whatever we say, believe us and do your best to work around it. If we can’t come to you, go to us. The likelihood is, if we’re good friends, we really could do with seeing your face and smiling for a bit. It is unlikely we will actually be able to hold a conversation for much over a couple of hours, but you will brighten our day and our dreams will be sweeter. Be understanding and don’t push and that alone will help more than you can imagine.

If anyone out there is reading this with cfs, I hope this has made you feel less alone. There are so many more people out there with this debilitating illness than anyone first thought, and the cavalry are coming. FOR SCIENCE. Keep your head up, keep working it out, finding what works for you personally, because it is different for everyone. Yes, it is likely most of us will live with this syndrome for our entire lives, but that is no reason to lose hope. That is, in fact, why we MUST hope, we have to believe it will get better and that there is a bright and happy future ahead for us all. And I do truely believe there is, if at first you have to drag your baggage down a bloody bumpy, pothole infested road for a bit first. Lay down some smooth concrete ahead of you, find what makes you happy without causing you to relapse and make sure you do it. Surround yourself with a fantastic group of people, friends, family and pets so that they can help lay your beautiful, shiny, glittery magical road. My friends are my world, I could not be who I am today without them, they have changed me for the better and for good. As the wisest of all wizards once said, “It is the unknown we fear, nothing more”, this wonderful world of logic and magic inspires me everyday. I listen to the audio books as I try to sleep so my mind can calm down and smile to itself and if it has taught me anything it is that no matter how dark things appear at the time, if we always strive to be the best we can be, to be good and kind and brave, we can banish the darkness from within ourselves too. Thanks JK, you’re the best.

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The general craic

Well hi there! Let me first introduce myself, my name is Kate and I have been living with Chronic Fatigue Syndrome (CFS) for nearly 10 years now. I have tried to start a blog about it before, but I hadn’t really gathered my thoughts properly back then, whereas now, I am aiming to get the message out to as many people as possible, what it is actually like to have CFS and how awesome these people are! However, it is definitely helpful for me too! 😛 I don’t expect this to reach many people at all, but if it helps just one person, even if that person ends up being me, it will be worth it.

Also, let’s not lie, this is unlikely to be updated in anywhere near a regular fashion. I have another blog on here about my travels in Colombia and central america, which have nothing to do with CFS, but even then, when I was trying to keep in contact with my home people and also document everything I did for my own memories, this was not anywhere near regular either. But anyway, hopefully there will be more than one post, but who knows! Let’s just crack on shall we!

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