It is one of the most difficult things to deal with because you never know, from one day to the next, how your condition is going to affect you and by default, affect those around you. It is also one of the hardest things for people who don't have a condition or aren't around someone who does, to understand.
I will never forget something a doctor said to me very early on in my diagnosis. He said that "the most predictable thing about MS is it's unpredictability!" He wasn't wrong about that!
I have to admit that one of the most frustrating things, for me, about having chronic illnesses is when it stops me from doing something. If I have planned something or I'm meeting up with friends, going to the cinema, anything that involves me getting out and living my life but I then have to cancel it or change my plans, that's when I get the most frustrated........I guess it's when I have no control over the situation.....I'm not sure what that says about me though!
I'm having some issues like that at the moment and it's driving me mad!
Over the past couple of weeks my pain levels have increased again to the point that I am only just being able to function. I had been holding out for an appointment that I was booked in for at the hospital on 14th June. I had thought, wrongly as it turns out, that I was having my Lidocaine infusion. It is an infusion I have that helps with my pain.......I've had two of them so far, I believe you can have them every three to four months, but when I had the last one, just before Christmas, I was just coming to the end of the infusion when I came up in a rash. It was almost like a heat rash, quite blotchy but bright red and it was on my left forearm, my right upper arm and going all across the top of my back. My consultant was concerned that I was allergic to the Lidocaine and decided that he was going to refer me to a colleague of his to get a skin prick test done to check that I didn't have an allergy and that I was safe to have the infusion in the future.
I actually ended up having a challenge test done which meant I was injected four times (my favourite!!) The first injection I had was just ordinary saline solution, the second one was 1 in 100 of Lidocaine, the third was 1 in 10 and the fourth was 100% Lidocaine.
It turns out I wasn't allergic to it, which was great from my point of view, because I have found these infusions do make a difference. They don't get rid of the pain but it does dampen it down for about 6 weeks which, as far as I'm concerned, means it's worth doing! I will just point out that we are fairly certain that my rash is a side effect of the new DMD - Disease Modifying Drug, I started last year called Tecfidera or BG-12.
Anyway I had an appointment at the hospital and I, by process of elimination, had thought I was having my infusion, as I was behind in my treatment because of having the challenge test done. Unfortunately that appointment wasn't for my infusion at all, it was the pre assessment for a procedure I have had to have to put another collar button in my left ear!
I asked if they could tell me when my infusion would be, because I'm getting quite desperate for it now, and after making some enquiries the reply was "probably not before September!" To say I was disappointed would be a rather large understatement!
I have to say that the nurses at the hospital were amazing! Everything became really overwhelming and I couldn't see how I was going to get through until September with this amount of pain. It is such a hard symptom to deal with because no one can see it so everything has to go on what I say and I hate that! I am always questioning myself about whether it is as bad as I think it is or would someone else be handling it better than I am? I know I am being silly because ultimately whatever I feel is what I am experiencing......if it hurts me then it hurts!
I have always, right from when my symptoms first started, tried to put into words what my symptoms feel like. Martin has always wanted to know so it is something I have just naturally done. For example my feet feel as though someone as taken the skin off, shrunken it but then tried to put it back on my foot and they've had to stretch it all over. Or my hands feel as though someone has slashed them with a razor! My lower back feels as though someone has got a handful of pins that they are constantly stabbing into it and it burns. I could go on..........but you get the idea!
The nurse I was seeing for my pre assessment was great, she could see how upset I was when I explained what had happened and how long I am expected to wait for my infusion. She got Martin for me, made us a cup of tea and rang my doctors surgery to see when my GP was next in! She gave me so much time and never once did she try to rush us or get us out which we really appreciated!
I saw my GP a week ago and I have to say that here we have another example of wonderful care. We have had the same GP for around 16 years now but more importantly she has seen us through my diagnosis of MS, Menieres Disease and my under active thyroid plus she was like a dog with a bone when Martin was poorly, she never once gave up on him! We have a great relationship with her as she knows us both so very well and she knows that if I'm making a fuss it's for a reason! So when I told her what had happened about my Lidocaine infusion she didn't hesitate and she got straight on the phone to my pain consultant! He is going to see what he can do but he explained to her that the powers that be at the hospital only allow him two, two hour slots a week, to perform this treatment (that's the amount of time you need to do one treatment with recovery) and as it's working for people, the more they want repeat treatments, so, of course, the list is getting longer and therefore the wait is getting longer! I completely understand this, and I know this isn't my consultants fault, but it also doesn't get me the infusion I need and the likelihood is that I will have to wait until September for it. My GP has increased one of my other medications but, after a week, it hasn't really touched my pain which just leaves me wondering what else will??
Keep cool in the warm weather! ;-)
XxXxX
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