Hello all! It’s been a while I realise, sorry! I’ve been on holiday in Norfolk boating on the broads which was amazing and wonderful and just…perfect. I highly recommend it! I’ve also bought a couple of new pieces of kit! I am now the proud owner of a merino wool top and a pair of walking poles Though how I’m going to fit the walking poles in my rucksack for the flight may be interesting!
Anyway, whilst I would love to prattle on about my kit aspirations for the next month leading up to us setting off, there is something else I would like to discuss. It’s a matter that has recently presented it’s self in my life, in the form of taking over the life of someone very very close to me. Chronic Fatigue Syndrome, sometimes also known as ME is an illness that effects the lives of many by, putting it simply, draining them of their energy resources. Some people may think it’s a silly illness, or a fake one. But it is most certainly real. It is also one for which there is no cure. There is treatment, however it will always need some form of management, thus it is a debilitating disease that can rule over someone’s life in the form of this suffocating blanket that refuses to let them move at everyone else’s normal pace. There are of course science parts to it, and I will post them up at a further date, however it’s 2 minutes to 2 in the morning, and I would like some sleep soon. But I wanted to post this as it’s pressing on my mind and heart.
Why have I brought this condition up? Well, as I said, it’s effected someone very very close to me: my best friend. She was ill last year (February time) with a virus known as glandular fever. This is particularly horrible and it’s something that she pulled through from impressively and coped with amazingly through her A-Levels, well enough to get in to Cambridge University, which is fantastic! However, when she started at Uni, it seemed to reoccur, and she had to defer her place at Cambridge for a year. Time went by and she seemed to be improving slowly, however, recently things have gone down hill very quickly and painfully so. She has now contracted ME, or CFS. This means that on good days she can maybe manage a small walk with the dog and reading, and maybe a film as well as a little outing into the nearby village. On bad days she stays in bed or on the sofa, unable to move due to the sheer effort it requires of her powerless body. She does well at trying to balance it all, for instance, two weekends ago she spent the day resting so that she could go to a dance in the evening. And this evening she is risking a bad day tomorrow so that she could see me and another friend who is back from university. However, it is an undeniable fact that it has restricted her movements and her life, and it is heartbreaking to see such things. I used to know her as someone who went for runs with her dog, who played badminton with me and some other friends; scoring turning into playing for planets to make it more interesting! I knew her as someone who devoured philosophy books, as this was her chosen course at university, however she has found that ME/CFS doesn’t only effect the body, but the mind as well, as she finds it difficult to concentrate on such books. She has reverted to films that are easy to watch so she can keep track of things. She describes it as a ‘fog’ in her mind; preventing her from making connections and logical steps. She has to eat small meals, but more of them a day so that her sugar levels can remain constant and thus provide the best supply of energy her body can muster.
How do I know this? And why have I brought it up? When she was diagnosed, she started a blog to help her deal with the limitations now in place in her life as she finds it incredibly frustrating, upsetting and just anger inducing. I read her blog as often as I can to not only support her, but also see how she is as she write beautifully and is able to put in text what she may not be able to say. I read it tonight, and it saddened me as she is also in physical pain, with muscle spasms and shooting pains. It made me think just how lucky we, us Noklan members, are in our ability to go on this amazing journey. Not only will we have the ability to spend hours walking and gazing and the beautiful landscape that awaits us, but we are able to do simple tasks like putting up the tent and then cooking. Packing our bags quickly. Doing a day of science. We are able to push ourselves with relatively little consequence of the effects on our body energy wise. Obviously we’re going to be tired if we’ve walked up hill all day after a bad night’s sleep the night before, however such a task would be completely out of the question for sufferers of ME/CFS.
I don’t want to paint a pathetic picture of my friend. She is one of the most resilient people I know in dealing with this. She works towards things like getting her hair done, which makes her feel good because she looks good. It’s a boost in her day and she’s willing to go and get it, taking measures to make sure it’s something she can achieve. She will resolutely not fall into the category of looking ill and being a moaning mess that people expect. She is trying to be as strong as she can, and I think that is better than climbing any mountain in Norway.
Thus I am dedicating this post to her, and many more like it, as she is one of the most amazing people I know. And others like her who have ME/CFS are included in such statements, for they are fighting a never-ending battle, however they will never cease to prove that they can do things, that they will overpower the suppressing fog pushing down on them.
Below is her blog, please take time to read it and appreciate how lucky some of us are, and how wonderful some of us make the world even when it’s trying to beat them back.
The short one