Thursday 30 June 2016

The effect of brainfog is easier to see in hindsight

This was written in mid May, but I decided not to put it up whilst the 'ME from another perspective' series was going on, there were a lot of posts going up at that time and it seemed out of place. Since this was written my brainfog has been worse, but not as bad as it has been in the past. I am finding it difficult to adjust to varying levels of cognitive function, sometimes change is harder than things staying the same, because at least then I can adapt! Most of what I have written here still rings true. If I worried too much about always sharing things which completely describe my symptoms at the time of publishing, I would hardly ever be able to share blog posts. Chronic illness is very prone to fluctuation when it comes to both the range of symptoms and severity. It often takes me weeks to finish a blog post, in which time things could easily change a little! 

Recently I have felt the feeling of brainfog lifting from me which is a peculiar feeling. It is like having a heavy fog slowly removed, which I was so accustomed to that I didn't know how much it was limiting me. I have enjoyed feeling more like myself, and being able to think more clearly. Unfortunately it has also given me the ability to realise how ill I am, and for the first time I am frustrated and board with spending so much time in bed. Before I was just floating form day to day, which I think was the key to my contentment.

I am adjusting and know that I will find ways to cope with this. I also know that it is not necessarily a permanent change. The last few months have taught me that my health will improve and decline without any input form me, and I just have to ride the storm.

Good friends are hard to find, thanks to those who have stuck arund despite the fog.

I now realise that brainfog is a blessing in disguise, obviously less of it means that I am healthier, which is a good thing. But if anyone were to experience chronic illness to the point where they are ill in bed all day, I would wish them at least a bit of brainfog, because it makes things so much easier to cope with. My current problem is that my brain is active enough to write and I have so many thoughts, but my arms and hands are often too fatigued to type, a highly frustrating situation.

I also really miss the social contact that I had once before, again my brain is well enough to miss people and need that contact and support form other people. But unfortunately I am not currently well enough to see people, even talking on Skype or the phone is too much for me at the moment apart from on rare occasions! I am thankful for the small handful of friends who have stuck by me during the darker days of this illness, they have endured a year and a half of almost no contact from me and still kept trying. I haven't really felt able to fully articulate how much brainfog has affected my ability to communicate with others until now, I was so consumed by it, it was impossible to explain it and to recognise it myself!

Recently I have been writing much more, I hope to be in more contact with old friends more, and to be able to update this blog more. As I have said I am limited by the ability of my arms and hand to type, but other than that I am much more able to write than I was. Since mid April I have been updating my blog more regularly, I hope that I am able to continue this as I have so much that I would like to explore through words!

For anyone who wants to know what I have done to help my brainfog, it really is one of those things where it is impossible to say. I have been getting a lot of quality sleep and have been resting my brain a lot during the day which I think may have helped. I have also been taking omega oil capsules twice a day which the ME Association say can improve cognitive function. Obviously it is impossible to tell whether any of these things have contributed.

Thank you to those who have suck by me during my long periods of silence, true friends are extremely precious. I cannot explain why anyone would stick by someone who has so little to give back in return, but I am extremely thankful!

Wednesday 29 June 2016

Why I'm going to Breakaspear Hospital

I was sure that I had written a blog post about this before, and kept it safely in my drafts section, but have now realised that I've just thought a lot about talking about this on my blog! I first became aware of Breakspear hospital just under a year ago when a friend of mine announced that she would be going to the hospital. Over the last few months I have seen her health go from partial paralysis, to being able to walk short distances from her car to a building and so on. Since then I have become aware of two other people from the UK who are also being treated for ME at Breakspear! All three of who are experiencing a really encouraging, scientifically sound treatment.

It was 9 years ago now that I came down with glandular fever (or a similar virus) whilst on a school trip to Venice. Although I was not feeling quite myself for a few moths before then, my health began to gradually decline from this trip onwards, in November 2007 I finally became too unwell to attend school on a regular basis. My trip to Venice is the earliest time which I can pinpoint any ME symptoms. So I have been ill for 9 years, all this time I have been given false hope by the NHS that ME can be treated, but note of their treatments have worked.

Since joining the online ME community several years ago, I have learnt that the NHS treatments for ME have not worked on anyone who I know (and that's hundreds of suffers who I've come into contact with over the years). This has lead me, and many others to the assumption that there is no way of treating ME.
breakspear_6
I have always followed the research on ME as closely as possible. Brainfog has made this extremely difficult, which has often meant that I have had to rely on other people to summarise research findings. I became aware at some point in the last two years that there are some doctors in America who have been are able to effectively treat ME using a combination of drugs and supplements specifically put together to meet the needs of each patient. This gave me so much hope and there were times where I thought about how wonderful it would be to travel to America to meet these doctors. I never thought that a similar approach would be available in the UK, especially not for another decade or so!

After receiving treatment on the NHS which has harmed me, and at best, done nothing at all. I cannot simply trust any doctor who says that they will treat me. It has taken a lot of research and talking to other patents for me to reach the decision that this hospital might be a good option for me. There is no guarantee that they will be able to help me, but based on what I know about the treatments which thy offer, I think that there is a very good chance that they may be able to help me. I really believe in the science of what they do at Breakspear, and personally feel that they are many years ahead of the NHS when it comes to treating ME. The way in which they view ME fits with my own view that it is a complex illness with many biological triggers, this is in keeping with recent research!

There is so much that I would like to say about Breakspear, and I know that I will learn so much more about what they do once I begin my treatment there. The aim of this blogpost is just to say that I will be going there and my first appointment is on Monday the 20th*. I will aim to share as much about my experience as I can on this blog, and also on my social media. If it wasn't for the online community, I wouldn't have heard about the hospital at all, so it is only right for me to share my treatment process at Breakspear.

If you would like to find out more, here is a link to Breaspear's website, I also recommend flowing Rhosyn who is about two months ahead of me in her Breakspear treatment, Rhosyn vlogs and blogs about her experiences at Breakspear on her website, I find vlogs to be particularly helpful as they are much easier to follow from a brainfog point of view.

If anyone has any experiences with Breakspear I would love to hear from you, I will also try to answer any questions which people have as I embark on my treatment process.

*This was drafted on the 18th of June! On the day which this is posted I have already been to my first appointment, I was too unwell to edit and post this before my appointment.