Friday, 17 August 2018

Doctor believes patient shocker!!

Had an interesting experience today. For the last three years I have been struggling to get any help at all for ME (even the CFS clinic when I finally got there wasn't particularly useful). However since being ill I have put on lots of weight and am having lots of problems with my asthma so was referred to the weight loss clinic by the nurse.

Today I had my first appointment and it was very positive with the doctor actually listening to why I'm struggling to control my weight. I came away with referrals to dietitians, physiotherapy, sleep clinic and an OT assessment. But mostly a profound sense of shock at a doctor actually taking me seriously.

It just makes you wonder how much the prognosis of CFS/ME would change if patients were given access to the same kind of resources that are provided for some other health conditions. Although it does worry me slightly that any improvement will be put down to me loosing weight rather than the fact I may have got access to the help I needed through the weight loss clinic.

Hi there

So I'm trying to revive my blogging habit. I want to try to keep some of my health posts off FB. Not doing great at the moment. Have had a bit of a crash in the last few weeks and am struggling to carry on life as normal. Normally I try to be positive about my health but I just don't have the energy for that at the moment. I'm tired physically, mentally and emotionally. What I usually describe as a severe lack of coping. Doesn't help that this has happened at the start of a really busy month that I was looking forward to.

Thursday, 3 August 2017

3rd August

Oops I seem to have become addicted to Minecraft. Been trying not to nap after work. Too tired to do much and if I watch TV I just fall asleep. So I started playing Minecraft. It's my go to game when I'm not feeling well. But it's easy to loose hours playing it and it doesn't help me sleep if I play it too near bed time.

Tuesday, 1 August 2017

1st August

Slept for longer last night but still not really feeling better. Looking at the fitbit results I didn't get a lot of deep sleep which is when I feel like I've rested. Aching from physio yesterday but have more feeling in my fingers that have been numb since Christmas. Working from home but struggling to concentrate and don't have any spare energy.

Monday, 31 July 2017

31st July

Really couldn't get to sleep last night was restless and suffering with pain in my hips and legs. Spent most of yesterday just trying to get some cleaning done. Only managed to do the kitchen and dining room but was exhausted. Today I'm achey and tired. I'm also shaking my hands are unsteady and I don't have any strength.

A day in the life

Having trouble sleeping so I thought I'd write a little about what a typical day is like for me. I think I get about 6 hours worth of energy if I take it easy. So if we take a day when I go into the office.

I usually feel very groggy when I wake up and it an take a while to be fully functioning. So I get up, get breakfast and dressed in a zombiefied state. Hopefully after I'm dressed I feel awake enough to drive. Getting up, dressed and driving to work takes about an hour of my energy. So that's only about 5 hours left. If it's a fairly quiet day and I don't have anything too strenuous to do that's going to last me to about 2pm. If the office is busy that energy won't last as long because the noise and distractions will sap more energy. Also if I have meetings or something I need to concentrate on that will also use energy quicker. So I usually reach the end of my energy just after lunch. From that point on I'm running on adrenaline energy. It's harder for me to think and doing anything feels like I have lead weights attached. I usually end up leaving at about 3. And then the drive home is about an hour again especially if I have to do anything on the way home. So that's at least 2hrs I've been running on adrenaline. When I get home I can can barely make it up the stairs. If I'm lucky I'll get a couple of hours sleep and that will give me a bit of energy to make dinner. Maybe even enough for a shower. If I'm not lucky I'll get painful muscle spasms that stop me sleeping. Or just unrefreshing sleep where I sleep but it doesn't make me feel better. On those days I still have to try to get a meal made and eaten. Most days I end up watching TV all evening because I don't have the energy to do anything else. Once a week I do dig back into that adrenaline energy to drag myself out to choir practice just because it keeps me sane. And then I try to sleep at night but again that isn't always going to happen because of the after effects of pushing beyond the energy I had for the day. And then it starts again the next day never having enough energy and always in pain. Knowing that there isn't any treatment for it sometimes it just feels like an endless drudge through treacle.

Saturday, 29 July 2017

29th July

So feeling a bit better today. At least better enough to do things but of course I over did it. Went to a party in the afternoon with a little bit of dancing. Dancing is the thing I miss most about being healthy. I still try to do a little but even a short time leaves me breathless. I used to happily dance around the house whenever music was on but now I just never have any energy to do it. But afterwards decided to pop to the garden centre and of course when I got home repot a few plants. Now just about all of me hurts and I can barely make it up stairs.