Today’s post is part two of two – you can find the first post here.
Switching to ME Clinic Home Visits
At this point (towards the middle/end of 2015) they decided to switch me to home visits and somewhere down the line there was mixed communication. I was given the impression that it would be more of a living assessment and they would give suggestions on what I could change around the house to make daily life easier, but that wasn’t the case at all! I actually cancelled my home visit weeks before, as I was due to be moving house shortly and didn’t want to waste their time assessing somewhere I would no longer live. Once they realised, they told me that wasn’t what the visits would entail and we arranged for my first home visit once I was settled into my new house.
Home Visit 1
Two women come for the home visits – a Senior OT and a nurse. They both have very specialised training in M.E. I’d met them both before, as the clinic actually put on open days once or twice a year, aimed at helping family, friends and carers understand the condition and manage it better at home (really useful!) The first session ran over to 1.5 hours and was exhausting, but so worth it as it was very enlightening. They took me back to the very beginning of my ill-health (aged 15) and helped identify precipitating factors such as various illnesses, operations, traumas and stress. One thing to note – they really don’t mind you being in your PJ’s with messy hair… they’ve seen it all before!
One of the things they said lead me to a lightbulb moment of realisation… shortly before I got ill, I was in a very stressful job. As soon as I moved to my new job, which I loved and was much less frantic, my illnesses started. Apparently the body ‘realises’ it can now stop and deal with the years of stress and trauma so it totally breaks down. It then becomes unwilling to get better, as it has a ‘memory’ of what came before – to put it simply, it thinks that if it gets better, it will be put back in the original, stressful situation. You almost need to re-train it to understand that the stressful situation/danger/threat is no longer there and it is safe to start functioning again. Nobody has ever explained it that way to me before, and it makes so much sense. It’s nothing to do with me consciously thinking that way, it’s the body’s own subconscious and chemical reaction.
After my first session, I was left with some homework – I was asked to fill in an activity chart over two weeks, to identify any patterns. I was also asked to complete a brainstorming type form which looked at my strengths, weaknesses, precipitating factors etc – for example that I am a ‘starter/finisher’. This means I don’t like to start something and not finish it, meaning I find it difficult to pace myself by breaking jobs down into small, manageable chunks. Identifying things like this means I can see where I need to break habits for the sake of not pushing myself too hard.
Home Visit 2
My second home visit was yesterday. I filled them in on a few things I had forgotten to mention the first time (a botched appendix removal and years of recurring infections as a result) and we went over my homework. As someone who spends the vast majority of my day in bed watching TV (out of necessity not choice!), I was shocked to discover that according to the activity chart I completed, I actually get ZERO REST! They don’t class reading or watching TV as rest, as it’s still a mental activity. The only things classed as rest by the experts is guided relaxation, meditation, deep-breathing etc – i.e actively and deliberately resting, not stimulating the mind in any way. I couldn’t believe someone who spends nearly all day in bed isn’t resting haha!
The outcome of that is that we have set a little goal for me to work on until my next appointment in March. They would like me to try and do 5 minutes a day of formal rest – we chose guided relaxation as that is something I enjoy and I already have some good aps on my phone for it. I shouldn’t do it in bed, as my body shouldn’t get a cue that it’s time to sleep. They’ve asked me to sit upright in a chair, away from the bedroom, if at all possible. I’m going to do it on the chair at my vanity desk, which is next to the ensuite bathroom. I thought this would be achievable as it’s next to my bedroom and even on my worst days I can make it to the bathroom. I will also have my desk to lean on or prop myself on if it’s a day where holding myself up is difficult.
We ended the visit with a chat about my longer term goals – what I would like to work towards achieving (as they know I like me a goal!) I said I would like to be able to see my friends more consistently, even if it’s only once a month. At the moment I am barely seeing them at all and it’s something I miss. My next goal would be able to cook more, as it’s something I used to really enjoy. My husband often has to cook our evening meals after not getting home until 7pm from a full days work, so it’d mean a lot to me to take that back from him.
My Overall Experience
Overall, my experiences with the ME Clinic in the past two years have been really positive. Everything goes at a very slow pace, as they have to very carefully and gently implement any changes so as not to cause a ‘crash’ or flare. It’s much harder than it is for, say, a GP who can just keep prescribing medications until something works. You can tell the medical professionals have worked in the field a long time, as they have total understanding of the condition, its limitations and the reality of living with a chronic illness every day. They are also really kind and often humorous, which really puts me at ease.
If you have ME and want to know more about my experiences, please don’t hesistate to get in touch. I would love to help where possible.
[Edited to add: I have had so many responses and questions that I plan to do a further post answering some of them and providing a bit more detail/clarification. Once I’ve done that, I’ll add a link to this post. It will probably be next week though as I’m exhausted! Thanks to so many people for reading and interacting with me!]Never miss another post from me! Click below to follow me on Bloglovin. If RSS or social media are more your style, check out my sidebar! Follow