Wednesday, 19 August 2015

Let's talk about me

Hi everyone,

First of all I want to say a very big thank you for the amazing response to my last blogpost Let me put this in a way you might understand. I am so humbled that so many people read it and for the lovely comments I recieved. Thank you to anyone that shared it, inparticular those that shared it with family and friends in the hope that they may understand what it's like living with M.E or chronic fatigue as a symptom. I really hope that it helped.

It's been a little while since I've actually done more of a chatty post and actually discussed how I'm getting on lately, so I thought I'd take the opportunity to do so now that I have quite a bit to say. You know what it's like, living with a chronic illness you spend most of your time feeling like you are just going through the motions, trying to keep your head above water and get through it. Admitedly I have been doing my fair share of this for a good while now. However it got to the stage a couple of months back when I thought stop! I'm actually tired of feeling so helpless and hopeless. I think some of this feeling was bought about during May and M.E awareness month, because it becomes even more of a focus and you see so many posts and tweets. In no way is that a bad thing, I commend everyone that really made the effort and put what the could into raising awareness. However as a sufferer there's only so many of those posts you can read and not be reminded that we have it tough, and not many people out there are offering us any hope. Which then leads on to thoughts of how crazy and neglectful that is, when there are hundreds of thousands of people who are incredibley unwell. It makes me sad and it makes me angry. Anyhow, these feelings made me think "am I actually putting up with this a little too much?" Let's face it if anyone else felt half as bad as we do for only a day they would probably go straight to the doctor or hospital. Yet because we know we have M.E, we automatically put up with it and think well it's just the old M.E. We're just so used to feeling horrendous and being told that there's not much that can be done for us. I think this can be dangerous sometimes, especially if we develop new symptoms, because we're not immune to other illnesses and conditions either. We shouldn't always put things down to the old M.E and neither should our doctors for that matter.

So I decided to make an appointment with my gp and talk a bit about how neglected I feel. Not neglected by them as a gp practice but because I feel so left out in the wilderness due to the lack of help there is for us in general. It really baffles me how so many people can just be left to suffer and nothing is done about it. It felt good to get things off my chest. My gp decided to run an armful of blood tests, to check how everything was. Or you know whether they still say you're a picture of health (eye roll), which of course they did. My folic acid was a little low which could have affected my fatigue level a bit, so I did have a course of that for a month to help boost my levels back up.

I took the opportunity to share some of the research that I've been reading about online. Inparticular the one about changes in the white and grey matter in the brains of M.E patients. If you would like to read more about this click here. This was one I resonated with, because a few months before I was diagnosed I needed to have an MRI scan because my prolactin hormones went a bit crazy due to some medication and anxiety. However when they did the test they found what they described as lesions and abnormal changes in my white matter for someone of my age. The neurologist I saw was a bit baffled as to why this had ocurred and why I was not having any physical symptoms. Apparently the findings were conclusive with mini strokes. However with my health seeming to be ok, other than my anxiety, we simply decided to change my medication and to monitor any physical symptoms should they arise. I did get retested shortly after my M.E diagnosis and things seemed to have stabilised. However when I read about this research it did make me think about this time and whether this was some kind of precursor for things to come. This combined with an increase in muscle switches lately encouraged my gp to write again to this neurologist to investigate further and find out whether there could be a connection. Who knows when that appointment will be though? I've not heard anything so far. Plus I'm not holding out too much hope for it seen as we're used to things not being that simple. But you never know.

Recently I read a blogpost by Jess at Why is life so lush all about how she had got her mitochondria tested through a blood test. You can read that post here. This blood test is not available on the NHS but is one of the tests offered by Dr Myhill. Jess wrote about how she had had the blood test and sent it off to their laboratory to be tested. Dr Myhill then analysed the results and sent the findings along with suggestions of future treatments that she recommended based on the results, to her gp. I've been reading a lot about mitochondria lately and I think it offers a real explanation as to why we feel as we do and how post exertion malaise is our enemy. Therefore I think getting this blood test would help in a way to have more tangiable proof that something is wrong not just feeling terrible and a whole heap of symptoms. Although part of me does think that mine will come back and tell me nothings wrong, just to bite me on the bum. I showed this to my gp and discussed it with him as I wanted to have his cooperation on it too. To be sure that he would take on board the results and suggestions and help me to implement them. This is not something he'd heard of, however he was keen for me to give it a go if it meant having answers and that he was made aware of things to try going forward. I think having your gp's cooperation on this is important as they are the ones that will recieve the information and who can hopefully help you afterwards. I'm sure some would disagree with it but luckily mine was willing to help. Unfortunately as it's not available on tbe NHS it's quite expensive, so I've waited a little while till I can afford it. Saving up for a blood test is definitely a new one. However in that time the site has gone a bit crazy and had a big influx of patients, meaning they've had to put a holt on any non direct patients for the time being. They reckon this is possibly the result of her new book Mitochondria not Hypochondria. So that was a bit annoying. In the mean time I've ordered the book in the hope that it holds some answers too. I'll be keeping an eye on the website for when blood tests can be reordered.

So that's pretty much where I'm up to lately. Trying to get by but at the same time being so fed up of just getting by. I need to try to stay as positive as I can but at the same time I recognise that getting upset and angry is ok. It doesn't mean I'm hurtling down that depression spiral. It just means I'm acknowledging that things aren't lollipops and rainbows and is it any wonder? It's healthy to acknowledge these feelings and let them out. I think it's a miracle how we're not breaking down more, with all we have to go through. Hopefully soon I'll be back to my chipper self.

I have a few other things I'm looking into to help me regain some control of my life and illness but I'll save them for another day when I'm a bit further down the line.

I hope everyone else is doing as well as possible.

Sian X

1 comment:

  1. I should totally be asleep but just read this & if I don't comment now I'll forget! So glad you have a supportive doctor..it really does make a huge difference. And hope you get an appointment soon. A few people have suggested to me being tested for Lyme just to rule it out so not sure if you've ever had it done. I keep meaning to ask my GP. Hugs & I know it's so tough but keep smiling xx

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