A very good thingy

A very good blogger gave a tip which has helped me out a lot of late.

If one presses ctr and + at the same time on your keyboard, the font enlarges on any blog.  It even remembers on return visits that the reader prefers it that way.  I have no doubt that everyone apart from me knows this already but I don't mind admitting my ignorance.

Small things these days please me.  Not my ignorance I mean the ctr + thingy.

A small request when I post and say thingy, I would much appreciate any word suggestions to  replace my thingy.  I used to have a wide and varied vocabulary it seems these days that most things are thingys.

Don't want to know

Don't want to know

because I am one of those

sensitive kinds


edited to remove link as I think I have already given it previously.  I will read the whole eyedoc post properly to see if ocular manifestations in EDS information has been updated.

Going on a troll hunt..... via Michelle

Why bother blogging when there is much better stuff out there to read than my meaningless ramblings.  The link below is to a post written by Michelle over at Living with Bob.  A blogger of note indeed with a most brilliant mind, natural ability to write with wit and integrity. Who lives with severe  dsyautonmia (many with EDS have POTS) so I have a feeble excuse on keeping it real on the EDS front by linking. 

Apart from that my only other excuse is I am suffering some sort of blogger disease, caught I think whilst traversing the globe on the blogging bus. The symptoms of which are a vague mish mash of self doubt with a pinch of chronic oh my god who wants to read all this crap type syndrome thrown in.

Please do click the link and enjoy.

going-on-troll-hunt-

Have a troll free day all.

ps. I need to organise my reader.  I spent an evening adding random blogs and now I am struggling to visit all my trusty favourites.  I hear those bloggers breathing a massive sigh of relief as this means they don't have to put up with my interminably long comments.   I have realised though that there are only so many blogs one can follow before the sad day arrives when one starts labelling them and sorting them into daily/weekly/monthly catch ups.  I strive hard not to be a boring fart so refuse to go down this route.

Doing that thing again...

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. 

They shoot horses don't they.......

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......