In the depths of winter when I'm struggling to keep warm and suffering from yet another sinus/chest/throat infection, people always tell me I'll be better in the summer. I always hold on to that hope but every year I seem to get sick as soon as the sun starts to shine.
Most of my hospital admissions in the past five years have been in the summer. Between the month of May and August I seem to come down with everything from hayfever, dry cough and breathlessness, tonsilitis and post strep reactive arthritis, worsening constipation, lower abdominal pain, kidney pain and UTI/cystitis symptoms, and headaches, sore eyes and fatigue.
I used to love being outdoors but now I seem to spend most of my summers stuck inside struggling to cope. Am I allergic to summer? We are always moaning about the weather here in the UK but when it starts to get warm the heat just drains every last ounce of energy from my body. It takes all my effort just to function, which is not ideal when the kids are off school and I just want to get out there and do stuff with them.
At the moment I'm still struggling with the Sjogren's flare and the flare up from overdoing it on the rehab course. I've also had a lot of organisational work to do. I wrote to the rehab team giving them feedback on the course, which they appreciated. I wasn't very happy when the team wrote to Dr Mittal with their version of events. They made it sound like I didn't try and that I left because I was worried about the cut in my social care package, which couldn't be further from the truth! I telephoned them and the physio I spoke to said they didn't mean to blame me so I have written to them explaining things from my side. The course was simply too physically intensive and flare up my symptoms, that's why I had to leave.
I asked if I could go and see Dr Cohen. I was originally referred to her because Dr Sobey from the EDS Service in Sheffield said I was a complicated case and Dr Cohen was the only doctor in the country with the knowledge and expertise to diagnose me. When I got my appointment it was to see Dr Mittal but I was reassured that she was every bit as good as Dr Cohen. Unfortunately she was not able to diagnose or even investigate my possible autoimmune issues, she just confirmed my EDS Type 3 diagnosis (that's the old name for Hypermobile type) and referred me for rehab.
I received an email from Dr Cohen's secretary telling me to go and see Dr Mittal again. I can't see Dr Cohen because she is "very busy" and currently booking appointments into next year! I am a little disappointed. Dr Mittal was nice but if she was going to do anything about my other issues why didn't she do it in January before she sent me on the rehab course? I guess I'll have to wait and see.
My diary is full of appointments over the next few weeks. I'm going to the POTS clinic in Sheffield on Monday to talk about my trial on Midodrine. I was only on a low dose but it didn't do anything for me other than cause some irritating side effects. I'm not sure if it's worth increasing the dose as it interacts with a lot of other medicines, including antihistamines, non-steroidal anti-inflammatories and steroids.
I have an appointment at a pain clinic to see what we can do about the pain in the back of my head and neck. My GP thought it could be occipital neuralgia, which I happened to mention at the previous appointment but I let her think it was her idea ;) The treatment could be injecting a local anaesthetic and steroids into the back of my head. I'm not sure if that's such a great idea as steroids are not recommended in EDS patients and local anaesthetics are not always effective, but the pain is restricting my movement and preventing me from doing any physio so I've got to do something.
I'm going down to London to see Dr Mittal in early August and two weeks later I have an appointment to see a rheumatologist at Bassetlaw about managing my Sjogren's Syndrome. I'm not too hopeful about that, my previous experiences of local rheumies have not been positive. I can but hope! I think I need better treatment as the hydroxychloroquine, eye drops and mouth gels are not keeping things under control. I don't even know if my Sjogren's is primary or secondary to something else. Maybe they will be able to answer some of my questions.
As for the social services debacle, I am STILL waiting to hear back from the regional manager. I emailed him five weeks ago and have not yet received a reply. The nice lady from the complaints department has been chasing him on my behalf and he hasn't even replied to her yet! I telephoned his secretary yesterday and she appologised for him not being in touch. It's not exactly polite to ignore someone for five weeks and not even acknowledge their email. The manager was out of the office yesterday so the secretary was going to speak to him today about the matter. Fingers crossed we get somewhere because this has been going on for five months now and I just want it sorted.
It's lovely and sunny outside. I might dose up on antihistamines, put on my shades and try and absorb some vitamin D - symptoms permitting!