On the 20th
of June I moved house. My old accommodation was supported accommodation and thanks to the environment being quiet I’ve been able to balance the health very well for the past
year. I was able to sleep well and this stayed of a lot of my sickness. As
always it is slowly requiring more sleep to do things, but it was being balanced.
However,
moving into somewhere new has been a bit of a mess. I ended up paying more than
I thought I was going to in this new place and even though I can afford it the
extra money was meant to go to free up debts. I should have paid more attention
to the contract but for various reasons my brain wasn’t paying attention
and I had gone into overly trusting Steven mode. I’ve learned not to do this too often as it causes problems but slipped back into. Trusting people is good, but
not if it’s going to have a negative effect on you. And that’s the mistake I
keep making in life.
This financial
change caused a lot of stress and frustration as it constantly feels like I’m
being financially penalised because of my health. I even stopped paying some of
the bills/money for where I’m living now. Some of what I have to pay is for support but
it’s not needed as all I need is an environment that I can rest and get my
naps. And with that not being provided I felt it was wrong to be paying that
money. However, morality rarely comes into these things so after a meeting with
my care coordinator, my previous housing officer and the owner of the care
business that owns the house I was pressured into paying that money. This was
done without any real justification as to how it actually benefits me paying
that money. Of course they said all the right things and how I can use the paid
support as time to help me and they’ll use that time to help me. But deep down
I knew it was just words and would just have to pay it and accept once again
that this is just the way it is. And I was right. There hasn’t been a use of
the time I’m supposed to have to help me, but just clean the house. I’ve come
to terms with this now, but for the first month of living here it was hard to
accept.
There are
various processes underway of possibly finding somewhere else to stay but I
forget that actually accommodation is very limited and a lot of it is actually
most likely worse than I have now. Also that it’s very expensive no matter what
accommodation I’m in and that I’m lucky to get housing benefits because of my
sickness. It’s all relative I guess, but I think about what I could have been
earning if I was healthy and what accommodation I could have had and surely I
should be able to have that. I know that’s silly and have to keep accepting
things and being thankful for what I do have and not angry for what I don’t
have. Not easy at times.
In terms of my
health, my sleep is regularly disturbed in the new accommodation and this was
causing a lot of struggles for the first few weeks. Because I wasn’t getting
enough sleep I was feeling nausea's and very nearly sick on a few occasions. The
depression hit back and the anxiety was slowly creeping in too. If I don’t
stick to the routine my body then goes to the other extreme and I can’t sleep
at all. Everything gets very scary when this happens and is what led to me
ending up in hospital last year for two months. My body and mind just break and
I don’t ever want to be in that state again. The only thing that fixes me is
rest and lots of sleep. I wasn’t getting it in this new house so stayed at my parents house
while they were away the second week in July. I was able to get the naps I
needed and felt relatively okay because I was able to spend a week recovering.
During all this upheaval I made sure I let my care coordinator know what was going on but there was
no real way anyone could help. This adds to the depression as it all feels
so hopeless at times. The fragile tightrope walk of my health is harder and
harder as the months and years go on and I’m at a stage now where even the
slightest disruptions for a few days can create very big problems. It’s
hard trying to make people see that and accept it. I don’t expect them to
understand, but see this is how it is for me. It’s hard not feeling like
I’m being a fussy git, or to show people that I’m not being a
hypochondriac.
Even after
staying at my parents house and recovering a bit it was back to disturbed
sleeps when I was back at my new place and once again found myself getting very
ill. I had to find something that could reset my sleep and make sure I was
getting enough. I took a big risk and decided it was time to try some sleeping
tablets. So on Thursday of last week 4th of aug I skipped my midday
nap and then at 2pm took a couple of sleeping tablets. This knocked me out for
three hours. The risk came in not being able to then sleep at night and make
things worse. Luckily I was able to sleep and got my usual 11-9ish sleep. I
felt a lot better and was very relieved it worked. I think now I’m going to do
this once a week and it will allow me to keep myself from getting very ill.
I’ve also had
a meeting with a CFS/ME specialist in Bristol. This took place on the 8th
of Aug and was reasonably beneficial. It was a consultancy meeting and we
discussed all that’s been going on over the last 6-7 years and more so what’s
been happening recently. She said I definitely fit into some of the CFS
criteria but the feeling relatively okay after sleeps and the vomiting don’t
really match the pattern of CFS/ME. She said usually it feels like you’ve had
no sleep. The problem is I talked too much about how I do feel fine if I do get
the massive amount of sleep I need. I didn’t clarify enough that if I don’t get
that, then yes I do absolutely feel like I’ve had no sleep and am totally
drained of all energy and fatigued beyond belief. I’ve taken notes and will
make sure I tell her this is the case when I see her again in a couple of weeks.
As for the vomiting that’s the really strange one. The fact I now start
vomiting after a short period of time when not getting my naps is not part of
the CFS/ME bracket so she said she’d speak to her co-worker and see if he had
any ideas at why this is happening.
