Wednesday 27 February 2013

Doctors 2/ No more exclusion diets woopwoop!

Hi everyone :)

Well I had a doctors appointment today, my last one in this town until I can afford to live with my partner again. I think it went quite well actually!

So last night I was thinking about it and getting pretty anxious actually. It's just after going round and round in circles all I've felt is my symptoms get worse and my mental health deteriorate. I wouldn't use the word 'depression' as such but I have felt like I've been heading down that path. I'm a member of a facebook group for invisible illnesses and I decided to leave a comment there just to say how I was feeling and ask some advice. My main question being: do I go in there with the faith that the doctor will say what he thinks it is, or do I say 'I think it's m.e./cfs/fibro' and see what he thinks. I got a great response with the advice that I should do both and make sure I'm listened to.

I wrote down all my symptoms again and added the new ones and little symptoms which have become more regular. I'll try and remember them all (he took the paper off me) so these are as below:

  • Dizziness/Faintness
  • Headaches
  • Joint aches
  • Muscle aches
  • Chest pains
  • Nerve pains
  • Stiff joints in the morning - take ages getting out of bed
  • Legs lock when kneeling down - old symptom that used to be once in a blue moon but happens a lot more now.
  • Clumsiness
  • Shaking (This doesn't happen all the time, mainly on the 'bad days')
  • Extreme Fatigue
  • Breathlessness due to pain and fatigue
  • Confusion - as if my mind is 'racing'
  • Trouble finding words - mind fog?
  • Blurred vision although glasses prescription is correct
  • Nausea
  • Weakness - don't feel safe walking downstairs/outside sometimes
  • Overactive bladder - trying to cut down caffeine to help with this.
  • Low moods/anxiety (as a secondary symptom to the physical symptoms)
  • Sleep problems - mainly due to racing thoughts and pain
Phew, I think I've got them all down! I tried to add more detail and I put annotations like the symptoms get so bad I feel like I can't work until I'm managing them at least a bit.

So yes, anyway, I made sure he listened to this and how it was affecting my life/independence. I actually started to cry at that point, composed myself though (not easy for me, once I start crying I find it hard to stop). I think it was just due to how fed up I was feeling and the reality of this ridiculous amount of symptoms that seem to be controlling everything I do or plan to do. I do push myself too hard and face the consequences long after. I just want to be functional! I literally can't afford to put my life on hold. Being ill doesn't pay the bills. I made sure I mentioned CFS as well. I said that I've been keeping an open mind about what it could be but everytime I look up conditions with the symptoms I experience, it always comes back to that.

We went through the diets he'd tried me on and the blood test results then he checked my heart (all's fine there, probably just beating a little fast because I was shaking so much). He then asked if he'd done any neurological tests on me. He hadn't. So we went onto that next.

I felt as if I was being tested for drunk driving lol! The only thing that was missing was to stand on one leg and recite the alphabet backwards (I would've failed that one miserably!). Firstly, I had to follow a line on the floor and walk heel, toe, heel, toe. My concentration levels were stupidly low today so it took me a few goes to do it properly and when I did it back the other way, I fell into one of his chairs. It was one of those 'you just have to laugh at yourself otherwise you'll cry!' moments. Next was to walk around on heels then toes. Then I had to do thinks like follow his finger with my eyes, touch from nose to his finger and back fast as possible with index finger of right, then left hand. Then I had to smile (maybe to check facial muscle weaknesses?) 

We then addressed the blurry vision and he checked my eyes, no problems there from what he saw.

After all that he sat me down and said he reckoned it could be fibromyalgia. It was nice to hear at least a 'maybe' of what it could be instead of all these 'maybe you're intolerant to this' speculations. So basically he's prescribed me Amitryptiline, saying that if it helps with the pains then it probably is fibro, and he's referred me to a General Medical Specialist at the hospital. So I have to make sure I keep my mobile close for the next couple of weeks so I don't miss the phonecall to arrange an appointment. He's also given me a mental health questionnaire to fill in and give to reception just to check it's not depression, gad etc. I told him that, although my moods are low and I do get anxious, it is because of the physical symptoms and isn't what causes them. But of course I'll fill in the questionnaire. By the looks of it, the most I could have is very slight depression and a couple of mild anxiety symptoms. Nothing to indicate a diagnosis of either.

Finally it feels like things are headed in the right direction! I'll keep you updated on the situation. At the moment my big goal is to get well enough to work a full time job again. I want it to be ME who's in control of my life, not this illness. It does NOT define me and I won't let it.

I also want to say that my partner is such a rock to me, especially at the moment. I really really saw it today as well. He has stuck by my side through it all and never blamed me for how things are going financially at the moment. I love how close we are and how brutally honest we can be with each other. I hate bullshit and he's someone I know won't bullshit me. I respect that a hell of a lot. I even said that I would understand if he couldn't take this anymore because sometimes I feel I really am intolerable and I worry that one day I'll push him too far away. It makes me so happy that he's sticking by me though. I can't be all that bad then ;)

Ok I'll leave it here for now but to everyone who is there for me, listens, advises where possible, puts up with me (haha), I thank you SO much. You have no idea how much it means to just know I can pick up a phone or message and talk about whatever's on my mind. I hope I am as supportive to you as you are to me :)

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