Wednesday, 20 February 2013

My medical team

I had an appointment with my GP today (not good news- surprise surprise- more on that later) so thought today would be a good opportunity to introduce you to my medical team.

My medical team varies over time, but at the moment includes my: GP, nurses/nurse prescriber,  pharmacists, consultant immunologist, maxillofacial consultant and musculoskeletal physiotherapist (+ I am about to start with an ME/CFS therapy team physiotherapist). In the last year I have finished seeing my: occupational therapist, dietician and respiratory medicine consultant.
I'm really lucky to have a fantastic medical team and I actually get on really well with all of them, which is quite a miracle, because I'm not very keen on doctors and medical-type people (who is!?).
Having a good medical team helps because you feel understood and can see that you are getting the best possible care, even if there isn't currently the information available to be able to cure CFS or treat it effectively. They monitor your symptoms to check for anything new occurring and give you advice on activity management when new CFS symptoms arise or provide medications to try to reduce symptoms that get unbearable. I believe it's important for someone to be checking on your symptoms regularly because after a couple of years of symptoms changing and evolving it can become rather easy to just put everything down to CFS without considering alternative explanations (I had a chronic cough 'due to CFS' for 2 years before it was eventually practically stopped by higher doses of inhaled steroids for asthma). It's reassuring to hand your consultant a list of your latest symptoms and for him to say they are all typical of CFS; you then know that the likelihood is that they are due to CFS but your doctor can check whether you've been tested for other conditions that could cause any of the new symptoms to make sure nothing has been inadvertently missed.
Sometimes, this leads to new discoveries. My vitamin d, iron and folate levels were checked a few months ago, they had been fine when they were checked the previous year, but I was feeling particularly unwell so my consultant decided to check a few things- they were low- my vitamin d level in particular was severely low (which is quite common in the chronically ill).
I started supplements to treat the deficiencies and had a blood test to check how my vitamin d levels were going just over a week ago- today I went for the results. Despite fairly high dose treatment my blood levels were basically the same (slightly decrease!), so now I'm on 10,000 units per day (5,000% of the RDA) which is normally a weekly dose. So that's just great... My doctor was really nice though and I had a chat to a couple of the pharmacists who I get on well with (the other patients were slightly taken aback when they were greeting me and chatting away!)- one of them had been talking to another pharmacist to see whether there was anything she could recommend to help me which was nice of her (although she said last time that I was probably keeping her in a job with the amount of medications I'd been tried on recently, so it works both ways.. ;) lol). I certainly felt like everyone was totally on my side, which really helps when it feels like a constant battle with your health.
I know most people with CFS don't get anywhere near the level of support I get and I certainly don't take the support I get for granted- I've struggled with no support at all in the past and it makes an already very difficult situation even worse. Medical people may not be able to cure you, but by sharing their medical knowledge with you and helping to manage symptoms it makes the condition much more bearable.
Anyone out there with CFS and no medical support, get some. If you're in the UK ask for a referral- contact an ME charity and ask for advice on where you can access good medical care- you shouldn't, and don't, have to face this alone!!!
I've been really pleased to get such positive feedback about the blog so far- I'm glad people are enjoying it and finding it informative :) Do let me know in the comments if there's anything in particular you'd like me to post about!

1 comment:

  1. This makes me so sad. I've been progressively getting sicker for 3 years. All tests show nothing, and I can't find a doctor to give me the time of day for the last 2 years. They all treat me like a hypochondriac. I'm completely disabled now and have no private insurance (In U.S.) because I can't work. Every day I wonder how I'm going to make it. This feels so unbearable. My family doesn't even help me since the doctors don't take me seriously. :'( I'm just trying to keep existing. I don't think I'll ever get treatment of any kind. I'm 25 now, and my entire future is gone.