You will remember that I wrote last week about some autoimmune type problems that I have been suffering with, if not you should probably read Ow my body hurts, before reading this.
I was all ready to come and have a big rant about the NHS today, having seen the GP yesterday. But I am glad to report that progress from this perspective has been good, steps have been made to get me healthy – for good I hope.
I find going to the GP a very nerve wracking experience, I have had years when I go and I walk in and then I put on my “people pleaser” hat and tell them “it hurts sometimes in my joints, and I get a bit tired, but I am very busy, so it is probably just that”, I inevitably come out with no progress. So I went in and I told them the truth of the matter, without any glossing over of the things that are going on. It has helped that I have been writing about how I feel as it happens, when things are bad, rather than looking back on it , here is a snippet:
“I have to write about this whilst I am in it because it is crippling and it is so hard to describe when I am not in it. The tiredness is immense, and it materialises in a headache in the middle of forehead and weakness everywhere, the idea of moving anything seems huge because I am so exhausted. With the tiredness I also feel on the verge of tears, not for any emotional reason, but very very weak and in pain. My whole body feels tender. My belly seems bloated, and eating is hard, I am not hungry, I am uncomfortable and clammy.
There are isolated areas of intense pain, throbbing in my toes and stiff and sharp in my fingers. My glands in my neck and my groin are sore and swollen. Every muscle fibre is achy, and raw, I feel like I have lots of tiny scratches on the inside of my muscles and my skin. Pins and needles appear periodically down the sides of my body and in my extremities.
I am frustrated, so frustrated, I have so much to keep on top of at the moment and every hour that I cannot work is putting more pressure on the future.”
I am actually amazed, re-reading those words that I haven’t actually skipped any work, although I have no idea how I have got through it, I feel like everything has been a big blur and I know that I have found it hard to step back and look at anything in life with perspective. So it has been important that I get to the doctor.
I sat in the waiting room spitting venom about how much I didn’t want to go in, how doctors don’t take me seriously, how I am clearly making all this up otherwise I would have had a firmer diagnosis. I was so afraid that they were going to do a blood test, find nothing and then leave me to fend for myself, sometimes I think that I am going mad, “I feel so much pain, but they rarely find anything to explain it, is it all in my head?”. But I received so many informative and encouraging comments the last time that I wrote about this and I know that they have diagnosed connective tissue disease in the past, that deep down I know this is not in my head. My body is also very aware that this is not in my head.
So, armed with my assertiveness, my writing, a letter from the osteo and a friend I scuttled into the GP and spelled it all out, I had my bloods taken, and was told we definitely need to refer you because even if the blood tests don’t show it we can see from the severity of some of these symptoms that something is going on.
So I now sit waiting with baited breath to get a referral back to the Mineral Hospital, which will probably take quite some time, I know that I have a lot of prodding and poking, blood tests and weigh ins to come. I also got prescribed some high power anti-inflammatories, which I am to take daily so hopefully the pain will subside and I will become slightly more lucid than I have been!
Thank you to everyone who was kind enough to comment or share their similar experiences. It has been a massive help.