Thank you all for your kind thoughts. Commenting in a post again on last posts comments!
Have Myelin, yes this totally makes sense but I am unsure if one could get that sort of option unless one was on palliative care. Also, whilst we have a good NHS system where apparently treatment is free to all in reality I doubt whether one could access this type of service unless paying privately. It does make perfect sense though. In theory with oramorph one is supposed to receive much better ongoing care at the onset of use but despite a recent medication review things stay pretty much the same. By that I mean they are supposed to gradually up the dose until efficacy is found then supply the slow release version at that level. I may go back to gp to discuss this aspect of pain relief. Our local pain management clinic and the gp, is not keen on oramorph preferring bubrehophine patches which I tried to good effect for quite a while until out of the blue suddenly they caused mind blowing headaches and I became allergic to the patches themselves. Thin EDS skin being the probable cause of this particular allergy!
One of the problems is that because a lot of the medications I take are not supposed to be taken whilst driving especially when I take them all at once unless I voluntarily hand in my driving licence I am probably under medicated for a good part of the day. I think there is a fine line between being so sedated that I am pain free and in the land of the super medicated and actually being able to function on any reasonable level. I shall be honest here and say, 4mg of diazepam, 150mg of Lyricafor the PHN, 60mg of slow release (M/R) dihydrocodeine and 2 5ml spoons of whatever dose is of Oramorph is not compatible with driving. There may be something else there as well that i have forgotten. Although I am never sure how safe driving is when pain is severe but thats just me. So I would never take all of the above and even contemplate getting in the car. I also have quite strong personal views on driving and medication etc as my gp has never questioned this aspect.
In my ideal world I would have a chauffeur. I hate driving at the best of times as Nechtan knows from a comment I made some time back on his blog. So am never far away from home but often have to pop to local Railway Station and pick up son quite a few times a day. I also have a husband who for various reasons does not drive in the evening so if my kids need evening ferrying around its me (I know I know they are not kids but they are my kids) I really don't take enough meds and on the screen at the gp it does say constantly that this is the case. My daughter drives but also has EDS so of late I find in order for her to even be able to do her part time work she cannot do the driving thing as well so I find myself required more than maybe someone whose daughter of the same age who could drive but without EDS if that makes sense.
Unfortunately there is also a problem with EDS and the efficacy with pain relieving meds but that is a whole other story. BSC - bendygirl wrote a recent post with great eloquence on this very subject.
Steph your points are always very welcome and you make good ones. We have been married over 20 years and we do muddle along often telepathically as is prone to happen when one has been together for a long time. The bedroom part has always required honesty as even though being bendy has its advantages it also means that he also knows that not all cries/moans for want of better words are down to pure undadulterated joy. It can mean that a hip/knee etc has dislocated and we have been known to lie on the bed in absolute fits of laughter at the ridiculous scenario's we have found ourselves in. He knows that certain positions require strong hands to hold hips straight! TMI no doubt so I won't elaborate.
I suppose what I was referring to was the reality of living with 'me'. I am really lucky because he loves the very essence of me and I have no doubt at all that even if I were paralysed he would stick with me and I him. He has epilepsy and because of the meds he takes at night he is unable to be woken at night. This is true to the extent that once even firemen could not wake him and the resulting scenario was that the fire was put out and he slept through it. (we were in a hotel) So sometimes when I have had a bad night he is only aware really from looking at me and seeing how I am and me saying that he actually knows, I am alone at night even if in sufficient pain that I may on the odd occassion cry. Not that this is me moaning actually its just the facts of our lives. Years ago before his epilepsy was controlled I would be as patient with him as he is with me now. To the outside world he can appear an alpha male very tetosterony and yet in reality he is kind, caring and patient beyond the bounds of reasonable expectation.
I think my last post was really me realising that I am lucky and yes I do need to remember that. I need to I suppose in the 'pacing' game remember to put 'us' into the equation. So you are right remembering to hug, be nice, when its a good day etc. is part of that and its easy when in pain to forget that also reaching out is OK. Its easy to unintentionally isolate oneself when in pain I think whether that pain be physical or emotional.
The fact that I am an eternal optimist does help though!!
Nechtan I can finally type your name without edit! yay.
4 comments:
Achelois, your man sounds wonderful and you are not sounding half bad yourself! Pain does horrible things to us but your kind spirit and sense of humour will keep on getting you through.
Nevertheless I do hope you get your meds balanced to a comfortable driving level sooner rather than later!
How is your father getting along these days?
I have to go for another lung function next week (test of lung volume capacity) All part of the bronchiecstasis (never sure whether I spell that right, even after a lifetime of suffering from it...!) process. All that deep breathing in and out makes me giddy. Still, good excuse for a large coffee and a cream cake or two in the restaurant afterwards - to restore the old blood sugar levels you understand - not because I'm a greedy pig or anything...heh-heh!
Take care.
Hi Geri Atric,
Thank you for your kind words.
This past week I am afraid he is not doing so well but there is complications from other medical matters.
My mother however is pleased that he is being referred for pulmonary physiotherapy. They did discuss yesterday at a gp appointment the efficacy of deep breathing and bronchiecstatsis (same spelling problem here I hope I have copied yours successfully).. apparently on record it is felt that deep breathing makes little difference but off record it does! So we are none the wiser on that.
I think what he is struggling with most is the impact it is having on his ability to 'do' stuff and interestingly enough the deep breathing also makes him giddy. He had at Xmas a really bad infection and pleurisy, and he likes to take steroids as they make him feel so much better and if he had his way would take them all the time!
I think with regard to lung volume capacity he feels he gets better at them the more often he gets to do them! Interestingly though his oxygen levels this week were 95 despite the fact that he feels as though he is gasping for air.
Its a little understood condition and in part I think that makes dealing with it difficult.
Good luck with the forthcoming lung function test next week. My father is a great lover of good coffee and cakes - it seems great minds think alike!
Take care.
Yes, steroid (inhalers) and the occasional sticky treat do help!
All the best to your dad - and yourself.
Yes- the sedative effects of drugs. Why can't they make them work without us nodding off? I too worry about driving (actually I don't take my medications if I plan to drive) but unlike you, I don't have kids to transport here and there.
I loved what you wrote about you and your husband. Tight bond you guys have and it shows.
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