On Being MIA
You may have noticed that things have been rather quiet on the Chez 0ddness front of late. And you may think life is boring and silent. However, if you've read my tired ramblings over the years, you will have come to realise that a quiet Online Dan usually means the opposite in Real World Dan.
And, more is the point, I don't even know where to start, what I can or can't talk about, or if I should warn you, dear reader, that if you don't like me moaning about everything, you may kindly bugger off now.
This last month has had hospital trips, sickness, illness, death, depression, and hard decisions, all rolled up onto five or six weeks of what feels like a constant uphill battle.
To start with, you may recall Kellie having many many medical shenanigans going on in the past. Well, despite the diet change and the medication change, the "it's just familiarial hyper-triglyceridema" is - for whatever reason - getting worse. Worse and worse.
I've said it before but will say it again - average reading is 2. High is 5, and above 5 is very high. Kellies first high reading was 22. She was started on statins which, frankly, messed her up completely. They came down to about 12, but the side effects of the statins were too much to bear, so the doctors changed her to fenofibrates.
Four weeks ago, her reading was 27. Increase in the dosage, stricter diet controls. Last week, her reading was 28.
I'm not going into it on here, but high triglycerides can cause and trigger all sorts of medical nasties, and the best the hospital can do is give her a "priority" appointment, then, which was six weeks away. Between Xmas and New Year.
Clean if the meds to fight this issue aren't doing a bloody thing, then it's not what they are saying it is. It's like me diagnosing your sore foot as a broken hand and putting a bandage on your wrist - it's going to achieve f$ck all.
So I sense the appointment that day is going to be somewhat heated, and making the doctor listen instead of talking over me.
Oh, and out of the blue, they've also decided she is now diabetic.
On my own front, and having one government department tell me they don't consider me to be ill, I've decided to stop seeing my "specialists" at the ME/CFS clinic. Now, before people spout something like "you need to give it a chance" I will point out - I've been seeing them for close to 18 months. If anything, I feel worse and shittier.
For one thing, I completely fail to see how Cognitive Therapy can fix a physical issue. I have a suspicion the NHS think this is all in the mind but won't admit it. In the course of my time there, we discussed self-assertion, dealing with OCD, coping with insomnia, and all sorts of other really reeeeally useful information.
Then there was the physio. In one breath I've got a patronising twat of a bloke telling me to do nothing, then telling me to push myself, then telling me if I over-exert myself, he's going to tell me off.
Er, what?
As I write this, it is just after midday. I've had a couple of averagely-busy days, and I'm struggling to find the energy and drive to get out of bed - not to mention, my legs are in agony, so I'm waiting for my pain killers to do something.
How can I push myself to do a certain amount of exercise when some days I can't bear to wear jeans because they're too heavy?
And the way he spoke to me... I know some members of the medical profession think they're better than everyone, but this bloke... Jesus, what an arrogant, patronising dick.
"If you don't do as I tell you, you might as well not bother coming back to the clinic"
You got it. Twat.
Plus on top of all this I've been feeling mentally shit of late too. So much crap on my mind, gnawing away at me. We go to bed between ten and eleven, and most nights if I'm asleep before two it's impressive. If I sit up till two then go to bed, I'm awake till gone six, so don't bother sleeping. Regards of sleeping till late or dozing off early, I'll wake up every time I need to roll over or get comfy. I'll have horrible shitty nightmares. Cramps will jolt me awake. I'll be too hot or too cold.
And on and on.
None of the meds I'm on seem to be doing anything once again, so it's back to the doctors I go to get a referral back to the Pain Management people, which strikes me as worrisome, as the last two times I was referred there, I had the first "specialist" tell me I was too young to be in so much pain all the time, and he discharged me there and then, and the second "specialist" spent the better part of an hour trying to convince me to go onto medication I knew I was allergic to, and because I disagreed with him, I was discharged as I was ignoring his professional medical advice.
Third time lucky I hope.
So with all that, plus friends going through hell with death and what-not, sick kids, me spending a few days in bed with germs - it went past Man Flu, and became full-on Flumonia - and Kellie being ill and everything else I'm NOT going into, this last month has been a write off.
In fact, I would go so far as to say November 2013 has been a BAD word. The baddest of the bad words. A complete and utter baddest of the bad words of a month.
December had better be decent.
And, more is the point, I don't even know where to start, what I can or can't talk about, or if I should warn you, dear reader, that if you don't like me moaning about everything, you may kindly bugger off now.
This last month has had hospital trips, sickness, illness, death, depression, and hard decisions, all rolled up onto five or six weeks of what feels like a constant uphill battle.
To start with, you may recall Kellie having many many medical shenanigans going on in the past. Well, despite the diet change and the medication change, the "it's just familiarial hyper-triglyceridema" is - for whatever reason - getting worse. Worse and worse.
I've said it before but will say it again - average reading is 2. High is 5, and above 5 is very high. Kellies first high reading was 22. She was started on statins which, frankly, messed her up completely. They came down to about 12, but the side effects of the statins were too much to bear, so the doctors changed her to fenofibrates.
Four weeks ago, her reading was 27. Increase in the dosage, stricter diet controls. Last week, her reading was 28.
I'm not going into it on here, but high triglycerides can cause and trigger all sorts of medical nasties, and the best the hospital can do is give her a "priority" appointment, then, which was six weeks away. Between Xmas and New Year.
Clean if the meds to fight this issue aren't doing a bloody thing, then it's not what they are saying it is. It's like me diagnosing your sore foot as a broken hand and putting a bandage on your wrist - it's going to achieve f$ck all.
So I sense the appointment that day is going to be somewhat heated, and making the doctor listen instead of talking over me.
Oh, and out of the blue, they've also decided she is now diabetic.
On my own front, and having one government department tell me they don't consider me to be ill, I've decided to stop seeing my "specialists" at the ME/CFS clinic. Now, before people spout something like "you need to give it a chance" I will point out - I've been seeing them for close to 18 months. If anything, I feel worse and shittier.
For one thing, I completely fail to see how Cognitive Therapy can fix a physical issue. I have a suspicion the NHS think this is all in the mind but won't admit it. In the course of my time there, we discussed self-assertion, dealing with OCD, coping with insomnia, and all sorts of other really reeeeally useful information.
Then there was the physio. In one breath I've got a patronising twat of a bloke telling me to do nothing, then telling me to push myself, then telling me if I over-exert myself, he's going to tell me off.
Er, what?
As I write this, it is just after midday. I've had a couple of averagely-busy days, and I'm struggling to find the energy and drive to get out of bed - not to mention, my legs are in agony, so I'm waiting for my pain killers to do something.
How can I push myself to do a certain amount of exercise when some days I can't bear to wear jeans because they're too heavy?
And the way he spoke to me... I know some members of the medical profession think they're better than everyone, but this bloke... Jesus, what an arrogant, patronising dick.
"If you don't do as I tell you, you might as well not bother coming back to the clinic"
You got it. Twat.
Plus on top of all this I've been feeling mentally shit of late too. So much crap on my mind, gnawing away at me. We go to bed between ten and eleven, and most nights if I'm asleep before two it's impressive. If I sit up till two then go to bed, I'm awake till gone six, so don't bother sleeping. Regards of sleeping till late or dozing off early, I'll wake up every time I need to roll over or get comfy. I'll have horrible shitty nightmares. Cramps will jolt me awake. I'll be too hot or too cold.
And on and on.
None of the meds I'm on seem to be doing anything once again, so it's back to the doctors I go to get a referral back to the Pain Management people, which strikes me as worrisome, as the last two times I was referred there, I had the first "specialist" tell me I was too young to be in so much pain all the time, and he discharged me there and then, and the second "specialist" spent the better part of an hour trying to convince me to go onto medication I knew I was allergic to, and because I disagreed with him, I was discharged as I was ignoring his professional medical advice.
Third time lucky I hope.
So with all that, plus friends going through hell with death and what-not, sick kids, me spending a few days in bed with germs - it went past Man Flu, and became full-on Flumonia - and Kellie being ill and everything else I'm NOT going into, this last month has been a write off.
In fact, I would go so far as to say November 2013 has been a BAD word. The baddest of the bad words. A complete and utter baddest of the bad words of a month.
December had better be decent.
2 Responses to “On Being MIA”
If its any help, hun, I think you made the right decision with the ME/CFS clinic. I saw it right through to the end, despite their treatments taking me from someone that struggles to work 5 days a week to someone that can't get into the bath unassisted and usually requires a wheelchair. The last session of the ME/CFS clinic basically consisted of the "professionals" sitting us down to tell us that honestly there was nothing else they could do and we'd have to get used to the fact that we'd always be sick.
You don't need that on top of all your worries for Kellie's health too.
Hope you both get to see some sort of stability soon xxx
I'm not surprised it seems like a bad month, it certainly sounds like one. I'm very sorry to hear it. That familial high cholesterol thing is such a pain, I have a friend with it. If it is any consolation they FINALLY got him stabilised on meds that brought it down to something reasonable. It took a while though. Oh and insomnia sucks too. I suppose you have thought about changing your doctor? That sounds too obvious....but sounds to me like someone needs to really sit down with you and talk with you about all this in a sane way. They call it joined up thinking.....
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