Shauna's post on pain - what the prescriber often forgets to say!
I frankly am just about to go to bed shut the door for 24 hours and say bugger off.
I think that quite often but never do it. In part because actually laying in bed for long periods of time exacerbates Ehlers Danlos.
I expect that anyone who reads this blog on occassion may be able to tell I haven't posted for some time because of that old worry about moaning.
Today I noted that I shout when I shouldn't. Actually I shouted out loud - perhaps I am shouting because I am in bleep biddly diddly swear words.. in agony. So Shauna's post above was a timely reminder to manage my pain like the grown up I am! So note to self today is, try to remember that it is not spouse's fault that I have EDS.
Spouse winced visibly when I shouted and shortly afterward announced he was 'off to bed, had a busy day'. I had driven him away. He loves me so much and of late I notice his silence. Have I gone too far, taking for granted that no matter what he will always be there. Lately I notice also that he mentions that he has woken in the night and I am not there.
Pain is more than physical. Its impact is greater than the individual with pain. My sister left suddenly when visiting the other day and I thought it odd. On the phone later in the week she told me that whilst she knew that I had bad days she had never really thought about it. Apparently she left because she was upset because she realised it was true.
The pharmacist told me to sit down and brought me a drink of water when I went to pick up repeat prescription meds today. She is a lovely Irish girl (woman) but I am 45 and in all honesty she looks as though she is not much older than my own daughter. I do know that she must be older than she looks as it takes many years to train to be a Pharmacist.
I am a fan of the independent chemist, I like the personal touch. I also appreciate the fact that they always stick to the rules of prescribing. I do not appreciate the Chemist in Tesco's who treat me like some sort of drug addict which I am not. I have a medical condition and do not take my medications to obtain any sort of 'high', I do not appreciate it when Oramorph is given to me decanted into a broken up doses. I do get three small bottles which is on the prescription for accesibility purposes, I cannot pour the liquid in the large bottles onto a spoon without pouring it all over the floor or dropping the bottle or dislocating thumbs, fingers, wrist.. We have tried various options including a plunger thingy with a plastic syringe but I can't push the plunger thingy into the bottle without dislocating.
if you have read the above link you may understand that I take oramorph for breakthrough pain. I don't take it all the time and it is on my repeat prescription. My gp trusts my judgement. So I like my Independant Chemist because they treat me with respect and they know that whilst I may stagger out of the premises clutching a carrier bag of repeat medications I am no junkie. They push the button which magically opens the door and they give me water when I obviously look a little unwell.
It is on my mind this evening that I must try harder to be nicer which probably means I should look to pain management again, pacing and all that jazz. It would certainly help if the houseword fairy did her thing. The amazing invisible decorator gave us a makeover. The lottery was won perhaps.
In the meantime, I need to have a think about what it is like to live with me. So I will start here in my blog so that I can come back and read it to remind me. Next time my spouse puts out his hand and says come here for a hug, I will come here. I will ignore the fact that the thought of the touch of a human hand agaisnt my hip that burns and grinds seems to much to bear. I will ensure he knows not that resting my head agaisnt his shoulder sends shock waves through my spine. The touch of a human hand from a loved one should be fine, pain is cruel.
They shoot horses don't they......
