A Milestone
So, today was The Day. After taking my first day "Off Sick" on 31st May 2000, and seeing doctors and specialists and clinics and professionals, and trying different medications and techniques and remedies and everything else you can think of, I have finally been told "This Is What Is Wrong With You"
Let me backtrack. I have been dreading this appointment today. Properly dreading it. I suspected I was going to be told "it's all in your mind" or "this is the wrong place, let me refer you to..." or worse-case "Faker!"
I've been stewing on it and worrying. Kellie has been doing her best to keep me at an even keel, but last night I hardly slept at all.
We had a rather busy weekend, helping the 0dd Mother-in-Law empty her loft for re-insulation, then Sunday we spent the day at the park with Clare (Kellies friend from school) and an assortment of children. I was knackered.
On the plus side, it meant that today, they could see me on an "off" day, so when I said "I have no strength in my hands or arms" they could see I actually had no strength in my hands or arms.
The questions and questionnaires I had to fill out were a little daunting and I kept getting confused on them, but had Kellie with me to help with them. Pain, Energy Levels, Concentration, Moods, Mental Stuff, other Medical things...
We sat and I told the doctors (there were two in there with me!) exactly how I felt, how fed up and miserable I am, how I am with my pain, how I was before I was ill... And, as per my other half, I had to tell them properly or she would tell them. And by that, I mean she would have said "The dozy git wears himself out by doing too much because he's a knob-head and I tell him not to do this stuff and I tell him to let me help but does he listen oh no because Dan knows best and blah blahblahblah..."
Sod. That.
It took them a few minutes to agree that I do in fact fall quite merrily slap bang in the middle of a diagnosis for ME/CFS. With all the mental stuff, the concentration, the lack of energy, the pain and generally feel shit all the damn time, it's "obvious to us that is what you have"
So how do I feel about it?
Mainly, I am relieved that finally I can say to people "THIS is what is wrong with me!" and not just let people think I'm a lazy bastard that doesn't want to work. I am happy they sat and listened and understood what I was telling them. I'm a little miffed it has taken so long. When they told me, it was all I could do not to burst into tears. I think Kellie knew, and took my hand and squeezed it.
I'm not sure how I feel to be honest. Time will tell, I suppose.
The plan of action now, is they have three departments: A Pain Management chap, a Therapist Lady... And... I can't think who the third was. The Pain Management bloke is also a physiotherapist, and will help out where he can, but because of "how I am" with my moods, anxiety, depression (which I admit, I hide very very well) and my brain-related stuff, I am seeing the Therapist first - Cognitive Behaviour Therapy (CBT) to help me work through things.
They have also increased my Lyrica/Pregabalin dose by 50% so I am now on 450mg a day, and can go up to 600mg apparently.
I was open, I was honest, I answered all the questions truthfully and didn't hide anything nor make anything seem worse than it actually is.
So time will tell.
Thank you to my Kellie for being with me, for taking me, and for holding my hand. And thank you to Mand for messaging me on and off today to make sure I am OK and for understanding. Thank you to everyone that wished me well via Facebook & Twitter too...
And I will keep you posted as best I can with everything - not sure I will go into stuff with the CBT lady too much... Guarded as ever ;)
Let me backtrack. I have been dreading this appointment today. Properly dreading it. I suspected I was going to be told "it's all in your mind" or "this is the wrong place, let me refer you to..." or worse-case "Faker!"
I've been stewing on it and worrying. Kellie has been doing her best to keep me at an even keel, but last night I hardly slept at all.
We had a rather busy weekend, helping the 0dd Mother-in-Law empty her loft for re-insulation, then Sunday we spent the day at the park with Clare (Kellies friend from school) and an assortment of children. I was knackered.
On the plus side, it meant that today, they could see me on an "off" day, so when I said "I have no strength in my hands or arms" they could see I actually had no strength in my hands or arms.
The questions and questionnaires I had to fill out were a little daunting and I kept getting confused on them, but had Kellie with me to help with them. Pain, Energy Levels, Concentration, Moods, Mental Stuff, other Medical things...
We sat and I told the doctors (there were two in there with me!) exactly how I felt, how fed up and miserable I am, how I am with my pain, how I was before I was ill... And, as per my other half, I had to tell them properly or she would tell them. And by that, I mean she would have said "The dozy git wears himself out by doing too much because he's a knob-head and I tell him not to do this stuff and I tell him to let me help but does he listen oh no because Dan knows best and blah blahblahblah..."
Sod. That.
It took them a few minutes to agree that I do in fact fall quite merrily slap bang in the middle of a diagnosis for ME/CFS. With all the mental stuff, the concentration, the lack of energy, the pain and generally feel shit all the damn time, it's "obvious to us that is what you have"
So how do I feel about it?
Mainly, I am relieved that finally I can say to people "THIS is what is wrong with me!" and not just let people think I'm a lazy bastard that doesn't want to work. I am happy they sat and listened and understood what I was telling them. I'm a little miffed it has taken so long. When they told me, it was all I could do not to burst into tears. I think Kellie knew, and took my hand and squeezed it.
I'm not sure how I feel to be honest. Time will tell, I suppose.
The plan of action now, is they have three departments: A Pain Management chap, a Therapist Lady... And... I can't think who the third was. The Pain Management bloke is also a physiotherapist, and will help out where he can, but because of "how I am" with my moods, anxiety, depression (which I admit, I hide very very well) and my brain-related stuff, I am seeing the Therapist first - Cognitive Behaviour Therapy (CBT) to help me work through things.
They have also increased my Lyrica/Pregabalin dose by 50% so I am now on 450mg a day, and can go up to 600mg apparently.
I was open, I was honest, I answered all the questions truthfully and didn't hide anything nor make anything seem worse than it actually is.
So time will tell.
Thank you to my Kellie for being with me, for taking me, and for holding my hand. And thank you to Mand for messaging me on and off today to make sure I am OK and for understanding. Thank you to everyone that wished me well via Facebook & Twitter too...
And I will keep you posted as best I can with everything - not sure I will go into stuff with the CBT lady too much... Guarded as ever ;)
2 Responses to “A Milestone”
good for you mate, hope it eventually works out for you. meanwhile , keep taking the blog!
Love to you all , pete xx
At least you are now confirmed sick! Good on you.
The cure? I suppose that is different.
Relax, you are one sick puppy, and stop doing so much!
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