Well today I thought it was about time to arrange my second appointment as it had been over 4 weeks since my appointment in march. At that time the doctor had said that she would like to see the results of the blood tests I had just had done for my diabetes recall.
Today of course I spoke to another doctor, and had to run everything over again as either he didn’t have the details recorded on his screen or just wanted me to say it all again to see if anything has changed (or to see if I got my story straight! – yes I am sometimes suspicious).
- I said that I had started with this fatigue around 2 years ago and had originally made an appointment back in January 2020 and had some blood tests done. These came back without showing anything and as COVID was just rearing is ugly head and I was significantly worried about getting that as a diabetic, I decided not to pursue this at that time.
- Now my fatigue is interfering with my normal routine, often can not sleep or have bad quality sleep, then spend all day everyday day with fatigue, but sometimes if I had been pushing myself physically, emotionally, or mentally there would come a point where I would just crash. It’s like someone opening a tap and all my remaining energy just leaks out. At that point it can even be a major task to go to the bathroom. I may not be able to eat, sit up, watch TV or read and can only lay down and sleep. A couple of hours later I wake up feeling drained but at least partly able to function until I can finish the day and rest again.
- Weekend are mostly just resting so I can work again during the week at least partially.
- I an frequent in pain with muscle aches and also joint pain. Sometimes I feel very tender to the touch, especially my fingers and feet. This sometime exacerbates the sleep problem as my feet hurt however I lay.
- On top of this, I am sometimes very sensitive to excessive noise and it gives me a panic attack of sorts.
- To top this all off, I have problems with short term memory, to the point of forgetting the beginning of a sentence by the time I get to the end. I may say someone’s name and then the next sentence unable to recall it. Trying to learn things even in my chosen field of IT is more and more elusive having to read the same page multiple times, often reading something several times before even realising I have no ideas what I just read. Often I would have an idea to research, open a web browser and then immediately forget what it was I was researching.
- If often feels like my brain is wading through treacle!
As you may imagine this gets very frustrating. I didn’t mind having to go though it all again though as it helps me get it all straight in my head.
The doctor looked at my latest tests and said nothing showed up out of order and then asked the same (in my view weird) question about what I wanted to achieve by pursuing this. He pointed out that there was no test for CFS and no cure so it was like, “we’re not going to be able to help you anyway so why bother?”. I can’t remember what I told him to be honest, but I remember last time I was asked I said that I was concerned what would happen if things got worse and I needed to give up work. Having a diagnosis may enable me to claim my full works pension if I had to retire due to ill health.
He offered more blood tests for things they didn’t check for last time and said that they may refer me to rheumatology if nothing shows up. This kind of makes sense as that is where a lot of CFS gets referred.
He also said he was going to send me a phone number for a colleague is psychotherapy to do some talking therapy. I was expecting this as the NHS do often suggest cognitive behaviour therapy (CBT) for CFS even though it’s been shown to often cause more harm than good and even the National Institute for Health and Care Excellence (NICE) suggest that this is not offered without good cause and recognises the dangers of this approach.
I did point out to the doctor that I have zero confidence in CBT for CFS and that it just shows that is not believed as it’s clearly “something in your head and you can get better by thinking differently”. I said I would phone the number though and speak to them. Before agreeing to this I want to know that the psychotherapist has experience of CFS or they definitely won’t be about to help. I would also ask them how they believe this may help me.
Next steps are blood tests then smooth appointment after results come in…. Stay tuned to this channel!
