As if there isn’t enough to contend with, I now seem to have a raging cold. Four days ago I started to get a really sore throat (which at the time I put down to the constant post-nasal drip from my ‘hay fever’) and the next day woke coughing my head off and sneezing like it was going out of fashion. Now I’m wondering if the ‘hay fever’ symptoms I’ve had for the past 2 weeks were actually the start of this cold (when you have M.E. you don’t react to viruses like normal people and they can linger for weeks before your immune system decides to actually do something about them) or whether I’m just lucky and have both hay fever and a cold! I’m fairly sure it is a cold and not severe hay fever because my Mum also has it (not sure if she gave it to me or visa versa). I am miserable and having a massive pity party.
My subluxed jaw joint, which was just starting to heal ever so slightly, is now back to square one as every time I sneeze I can hear it pop out of place. The resulting almost permanent migraine, ear and facial pain really need to jog along now, cos they’ve seriously outstayed their welcome.
Just to add to my misery, the NHS Immunologist I wanted to see in Manchester re my possible MCAD has refused to see me! He says that I just have chronic urticaria (no mention of my drug and food reactions, skin blisters, dermographism, migraines nor bugger all else) and that with a tryptase level of 3.6 mast cell disease is highly unlikely (actually in MCAD tryptase is always normal!). He went on to say that M.E. doesn’t have an immune component and sufferers should just follow the NICE guidelines on CBT and graded activity. Holy shit. For a start I didn’t want to see him for anything to do with my M.E. (which I’ve had for 19 years – trust me when I say it’s been consulted to death) and secondly if CBT and a bit of gentle exercise cured M.E. there wouldn’t be 19 million people around the world suffering with it and the beautiful, talented and intelligent young woman Sophia Mirza wouldn’t have “renal failure as a result of M.E.” on her death certificate. I had heard such good things about this consultant (in particular that he recognized MCAD) I am just amazed he was so incredibly dismissive of my symptoms based on a normal tryptase result. I have now arranged to see an Immunologist privately down in London in September, which is 300 miles away and is costing the gross national product of a small country in fees, travel & accommodation (not to mention how on earth I’m going to cope with such a massive trip alone and feeling as ill as I do!). I’ll let you all know how it goes after the event.
Despite feeling like death warmed up, I have managed to add a new recipe to the site. I do miss ‘junk’ food every now and again, and have tried several recipes for burgers based on beans and lentils that were seriously vile. But this simple one for Quorn burgers is actually really tasty and, combined with some home-made oven chips and a dollop of Blue Dragon sweet chilli dipping sauce, makes for excellent comfort food (if only I had a chef, preferably male, single and wearing a skimpy apron, to cook it for me I’d be a much happier chick 😉 ). Go to the Main course section of the Recipe page and scroll down for the recipe.