Where I’m at

I’ve been struggling to write on this blog for two reasons. the first is illness. I’ve not been doing too well. The second is feeling totally overwhelmed and just not knowing where to start. I’ve been feeling a lot of emotions that I am starting to find the ability to name, and so I will use that as the basis for this blog.

I am grateful that I am no longer declining. For the first 4 years of my illness I declined fairly rapidly, in terms of how ill I felt, at what level i functioned; and more frighteningly – a rapid progression of physical impairment. It felt as if there must be a regular neurological attack that was causing various distinct impairments to emerge. I find it difficult to relate to the word ‘relapse’ as used in the ME/CFS community (something I want to write about in the future) because for me ‘relapse’ used to mean ‘something broke’. leg function, arm function, bladder function, swallowing, orthostatic intolerance. All of these were distinct events, and they were terrifying. In the last 18 months yes I have experienced crashes, set backs (things others might even call a relapse) but I have not had a distinct loss of function like this, and for that I am eternally grateful. In fact, my arm and leg function has improved tremendously. I think this is largely due to the enforced rest of lying down and not transferring in to my wheelchair. weight bearing and exercise was (and probably still is) a major trigger for periodic paralysis episodes for me to the point where these episodes blurred in to one big overriding physical weakness and loss of function. I do not know as yet if any of these problems have in fact been partially healed, or are just lying dormant until I weight bare again. I suspect a mixture.

resentment and grief – an often indistinguishable duo.
So so much resentment. Some of this is ultra personal and relates to things that have happened in my life – namely the break up of a 3 year relationship. This is not the place to give details, but I think it is fair to say that although I am grieving, for personal reasons this grief is often indistinguishable from resentment.

I feel resentment and disappointment that in the middle of January my health declined pretty quickly after I started the antibiotics for fermenting gut. I will write more about this another time – but right now I am struggling with having lost so many opportunities and that this big treatment opportunity has so far just made me ill.

I feel resentment that I have been ill for so long.

I also feel resentment about the way I am having to live my life due to social services and the NHS. My life is more difficult because of this and it is hard not to be angry, and bitter, especially when social services are doing all they can to ignore me. I’m still waiting for a response to a 14 week old complaint (response time should be ten working days)

I am hopeful still, but I find this has its own problems. How much is it reasonable to hope for? By continuing to hold on to this hope I simply cannot accept my life as it is – and emotionally that is really hard. I find it hard to just enjoy the bits of life I can, when I don’t know how much more is out there for me. after the break up and the issue with the antibiotics I no longer know what I am hoping for either.

The relationship break up and my health decline has turned my world upside down. I do not know what my future holds. When you are in a relationship you can look towards certain milestones like moving in together. When there is a central person in your life it is easier to imagine improvements because I can imagine myself in a restaurant with my partner for example. Suddenly I am having to replace partner with an unknown friend. I know I will have people to share these moments with, but I don’t know who. This has been made worse by the sacrifices I made to make the relationship work. I rarely saw my friends because I didn’t have energy for both, so I made the decision to prioritise my partner – so now I have been having to build up a brand new future on uncertain terms. Meanwhile I’ve not been well enough to see friends all that regularly anyway.

there is also uncertainty about where my health is going. How much more can I get for myself? How can I imagine a future for myself when I don’t know what my health will be like, if my social care will improve etc. I just can’t make any plans.

Fear and internalised guilt
Guilt that I am so ‘well’ and yet not out of bed. Guilt that I am not doing the right things for myself in terms of sleep and rest.

Fear of the unknown. Fear that this is it and fear that it is not. Fear of a change even if that means improvement because that means adjusting (although obviously Id love this) and higher to fall from. Fear that grips my every time I experience symptoms that are worse or reminiscent of worse times. I will write about this more another time…but it is very frightening to be thrown back in to a flashback of how bad things were.

and that is where I am at. Trying to build a life, with my eyes shut and not knowing what tools I’m working with or even whay I’m building. But I’m still trying.


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