Schools back but for me it’s now a long road back to normality after the holiday!! I haven’t really been able to (or ever been any good at) pacing, so my body is definitely rebelling. I’m aching all over with the exhaustion and my brain fog is so bad I’m not actually sure how I’m managing to write this!! It’s going to be harder for me to go out because I don’t have a car so mum and I go back to staying in, or just going to the garden centre!!! Unfortunately it’s hard now as my hands are getting so bad that the scooters controls are very difficult to use. I still however cannot afford one so it’ll be the scooter until I can qualify for one!! So for the next week or so I’m going to be trying to pace, resting not starting my new projects and just generally taking it easy. This isn’t laze, it isn’t a case of just wanting not to do anything, it’s a must. I must take some time out to recover and then hopefully I can start to do my projects and just generally feel a bit better!!
So in the spirit of catching up, my next instalment is doctors……..
A couple of weeks ago I had my second appointment with my new gp. She had arranged to see me on a Saturday morning which meant at least the surgery wasn’t as busy as normal which at least helps a bit with my anxiety levels. Also it meant that my dad could take me in the car and I could take my own wheelchair instead of having to manage with the surgeries chairs which no word of a lie have each got a fault and have all got flat tyres which make pushing me even harder. They don’t allow mobility scooters to be used around the surgery and to be honest it’s hard enough to get around in a wheelchair so a mobility scooter would be a complete nightmare!! The surgeries access is not great, it’s not the worst but could definitely do better. There is no space for a chair so you park on the end of a row or in front of a chair and are always in someone’s way, thankfully being a Saturday this wasn’t that big an issue for a change!!
Now I have to admit I’d kept forgetting to do my usual list so a hastily written one with just the main things was all I could manage before the appointment. She had however done everything she had said she would, she’d referred me to all the different specialists we’d agreed and so I just have to wait for those to come through. I have been having major issues with one of my knees again and it’s so loose that I am sublaxing it almost constantly (we have 14 stairs in my house and the other night my knee popped on every single one) and I’m waking up with the tell tale pain that says that it has been out of socket overnight. A referral back to the MSK (musculoskeletal) team for that one is on the cards, especially as my GP couldn’t really do anything else as I’ve seen physios and done the exercises they’d given to no avail. My liver function had improved slightly but as I’m still having symptoms my GP is going to refer me back to the hospital who removed my gallbladder so they can see if they can see if it’s just my EDS body recovering super slowly or if something more sinister is going on!!! My mood is low and my brain fog is becoming a problem but with everything else going on this is a more secondary worry really. However with increasingly severe and frequent symptoms with my POTS my GP has decided the time has come to refer me to see if I can get a full diagnosis from a POTS specialist. This is a mixed blessing for me for if I can get a diagnosis it will be great, I have always just self managed this. But on the other hand I worry that my symptoms will not be severe enough, or fit quite enough or all the other issues that my brain throws up before I see someone. My POTS has been suspected for a long time now, and after a few discussions recently I realised just how long I’ve been having symptoms that could have been POTS all along. But my anxiety of all specialists is taking over and all I can think is what if!! It will be like this until after I see first the cardiac specialist GP at my surgery and then if I see a POTS specific specialist!!!
So that’s it!! 2 appointments have brought a lot of specialist referrals and a lot more anxiety for me. I will go back to the GP after I’ve had a number of these appointments to follow up anything that comes from them. My fiddle toys will be coming with me to the appointments to help me cope with them and I will just have to try and manage my anxiety levels!!! Thought I’d share with you some of my fiddle toys, which is your favourite??
And last but not least my fidget cube…….
I don’t have a favourite, it just depends on what my anxiety levels are and what helps most at the time!!! I’d be interested to hear what you might have, and what your favourites might be. Please let me know below in the comments.