Breakspear medical :  the good and the bad!

It’s been about 2 months since I first went to Breakspear Medical, a hospital which specialises in diseases relating to the immune system. Before I went, I had heard both good things and bad things about Breakspear – and unfortunately my experience also hasn’t been completely perfect, especially as time went on. I wanted to be honest about my experience so far, both good and bad, and not only report the positive bits – because it wouldn’t be truthful for the people who were thinking of going there.

My first appointment went really well. We had stayed overnight at a nearby hotel which was 2 minutes away from the hospital. I wasn’t able to sit up very much so by the time I got to the hospital I needed to lie down – they gave me a bed to lie down in until I saw the doctor, which helped a lot! Then I went to see my doctor, and she was very kind and she knew about Simon Wessley (the psychiatrist who one of the main proponents of the Chronic Fatigue psychiatric theory I.e you think you’re ill so you’re ill) and she criticised him – which was a good sign! She also knew exercise can be bad for M.E. The doctor said she suspected I had a lot of problems with my stomach, which could have been contributing to immune system dysfunction and leading to autoimmune disease.  So she suggested I have blood tests (and stool and urine tests) – I was already prepared for this – in my research I found that Breakspear do run a lot of blood tests to try to find out what’s wrong, so all three of us (my mum, martyn and I) had saved up everything we could for 6 months (and a credit card) to be able to afford the tests. These kinds of tests are not routinely run on the NHS, mostly due to cost.

It took 4 weeks for all the test results to come through – because some of the tests are really specialised:

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New Year Hopes

At a time when so many people are reflecting on the past year, and hopes for the new year, I feel like retreating into my own little bed-blanket fort. Because this year has been very hard, harder even than the years that came before. In truth I started 2016 with a lot of hope and excitement. In January last year my mum did a social housing swap – which meant I was able to move out of our old home which was on the second floor without a lift, and we moved into a beautiful new home which is much smaller and all on one floor. I was slowly getting better and I truly believed by the end of 2016, I would be celebrating New Years by going out with Martyn, that I would be back at university – that I would be able to prepare a meal for myself. That I’d be walking around in London. 

Instead, this year has been even harder than the year before. I went through things I would never have imagined – I became so sick that I cannot really describe what happened to me without feeling so frightened when I think back to it. This year, my faith in healthcare was also shaken so strongly – I’ve always been a huge advocate of our healthcare system because publicly funded healthcare is a human right and a need, and of course I still am, but i could never have imagined that a section of society could be failed so badly and for so long by the health system due to political influence. I could not imagine a publicly funded trial, at a well known university (the university I was studying at!) would push me into such a state. 

Around the beginning of 2016, I was at about 40% on the M.E functioning scale:

In 2016, after the trial, I was functioning at 5%. There were times when my health dipped to 0%. Perhaps reading this graphic below will give an idea of what happens to those at this end of the illness. 

I was eating 2-3 Ella’s kitchen liquid sachets a day. I should’ve got a milkshake food replacement drink but was too ill to find out which one would be nutritious for me. (Over the past year despite eating so little I’ve only lost just under 2 stone – probably as I’ve been in bed all day so am not expending any energy.) My stomach would burn in pain as I wasn’t eating enough – and coupled with the fact that I have longstanding stomach condition from childhood which means I need to eat very regularly – it’s done a lot of damage to my body which I am now struggling greatly with.

Quite a few months on and with a lot of rest and ups and downs along the way – I am now hovering somewhere around 20%, which is severely affected.. just like I was back in August 2015. Sometimes I do feel even more unwell, and with any exertion I get delayed symptoms. When I do my blog now, I feel the post exertional effects for a week afterwards. I sometimes read for too long; I love reading more than any other thing in the world (except my loved ones and cuddly toys). Every time I see friends I am in all likelihood pushing myself as I become more unwell afterwards; but I do it anyway, even if infrequently, because I do not want to let this illness take away my friends and people I love and care for as well as everything else it has taken from me – that is too precious and important to me. Over the past few months there have been many ups and downs, on bad days it is worse, but I am hoping this baseline stays stable. I have been filling in a M.E/CFS electronic diary which only requires me to press a few buttons a day, and so is relatively ok to do every day – and that has also confirmed my physical baseline last week as 20%. 

My New Years wish is to get better. That is what I wish for myself and for others for whom illness has taken their dreams away – to be well enough to have plans and dreams again. I am only in my 20s and there is so much I still want to do. I wish to get my independence back again and to be able to look after myself. To walk into Croydon, get on the tram and go into town – or even to do this in my wheelchair often. To be outside and live my life. To wake up and do all the things I want to do that day, knowing my body could do it. To do the things that I would have taken completely for granted just 2 years ago. And I wish that day will come soon; I hope that 2017 brings more hope and that all these wishes come true. 

For some of us, New Years resolutions can be upsetting when we are so much sicker than our peers – when other people write up lists of things they have achieved or would like to achieve or do better and we physically cannot do even some of what is on their list, it is so easy to compare or blame ourselves and feel a lot of despair. 

We do deserve to live our lives as fully as others, but we cannot, and only those in our positions know how very painful it is; it is only natural to compare and wish for things to be different. I’ve learned the hard way it doesn’t help my health to compare to healthier people (but still do it anyway!) – in those times I switch off from social media and try to focus on just what I can do. I don’t have a New Years resolution to make myself a better person  – I try to remember I am enough as I am. I just hope for better times, and try to stay as happy as I can. I went into the new year huddled up in my blankets, feeling so grateful to have Martyn by my side – he is my shining star. And books bring me a lot of happiness, I’ve spent the past few days reading when I can, although mostly audiobooks. (Harry Potter on audible has been amazing – Stephen Fry’s narration just takes me straight to Hogwarts ⭐️). 

 I think this is me especially when in my healthier days: 
(Reposted via http://bookgeekconfessions.com/

And finally, Violets wanted to make an appearance… here she is, with her sparkly pink eyes. She’s relatively new to the house but has already made lots of friends with her cute personality and oodles of sweetness 💕🌟

Keeping hope when you feel broken

I’ve been meaning to write this blog for a while but it has taken a while. Thank you to everyone who is still reading and following my blog, it means a lot to me. Nowadays it is getting harder to blog, but I feel like even if I can only do something small, I want to raise more awareness of this disease, in particular those severely affected and especially in the aftermath of the recent media coverage of the FITNET-NHS trial. I also want to talk about losing the ability to communicate as I once did, and despite everything that is happening to me, trying to pick myself up.

In recent months, one of the worst things that this illness has taken away from me is the ability to communicate by talking, as I once did. Last week, my mum sat on the end of my bed and had a conversation with me, but I could not answer any questions, I could only nod. I could barely take in what she was telling me, because I started feeling incredibly unwell and needed to lay in silence. My boyfriend, after work, came and gave me a hug and asked me how I was. “I’m ok”, was all I could get out, despite my expression saying I wasn’t ok. When he kept asking me what was wrong, I couldn’t answer, I couldn’t even think of the words, and I felt like my senses were overload – in the end the next day I had to text him to explain what was happening to me.

I can type on my phone and read (with a lot of breaks), although they too take a lot out of me, but talking now puts me into a state of debilitation that frightens me. From what I’ve seen, this is a similar story for quite a few people who have M.E: that talking takes far more exertion than typing; the more ill they are, the less they can talk. Up until recently, I was speaking to a counsellor (not an NHS CBT therapist, but a private counsellor because I need someone to speak to about everything that’s happened to me). I was speaking to her on the phone for 15 minutes, lying in my bed. But even that became impossible, because I was having such bad relapses and started becoming very disorientated and confused within the sessions. During my last conversation, my counsellor, who has been practising for many years and has a lot of experience in dealing with difficult situations, including others with M.E, was in shock. She asked me “is this how bad M.E can get? Is this what normally happens? That even moving from your bed is too much, and lying flat on your bed, just talking, can make you so sick?” I told her, yes, I am a severe M.E sufferer and there are thousands in this country like me, but there are those even sicker than me.

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