Did not realise in how much pain I was in until a dear friend Cari sykped me and asked me how I was doing.
Could not cope said first I am ok then said of course I am not ok I have MS.
As if she did not know that, realised when she abruptly ended the call that I had been really hurtful which was not my intention.
On explaining what happened to Richie found out that he has been feeling abit distanced from me cos I was keeping quiet about how bad I was feeling, Richie told me he prefered to know.
Not knowing made him feel shut out and isolated from me, not what I wanted to do at all.
Just tried to concentrate on the positive and not spend everyday talking about how much pain and discomfort I am in and the prospect of more of the same plus losing more functions.
Richie and I talked and cried together,then Cari and I talked and now I feel alot better and have resolved to talk more about how I am feeling and to not keep so much to myself.
Today began badly with the bed sitting me up more upright than I wanted and not reclining again.
Gave us a big shock but luckily Richie could get it to go abit lower as had to wait from 10.00 am until 16.00 pm til the emergency chap got here.
If Richie had not been able to get the bed to slightly recline it could have been a painful day.
Especially as I have been advised not to sit up n the interests of the wound healing.
As it was it was an uncomfortably long wait.
Oh well played the quiz on freerice.com did vocabulary and capitals of the world and paintings its great fun took my mind of waiting.
But tomorrow is a new day. Our anniversary yippee! Richie is making me jerk chicken and pear/kwiwi crumble and custard as well as space cupcakes and the dogs will eat fresh tripe and I will sip a glass of bubbly.
Really pleased that I stopped taking sleeping tablets as I can sleep so much better without and its natural sleep not being thrown in and out of sleep and feeling slightly numb all day.
If I wake up very early, say at 6 am and am in pain and can't get back off to sleep Richie gets up and get me a vaporizer bag of thc which relaxes me and I can sleep again.
It's better than sleeping tablets and no nasty side effects like loss of appetite, feeling morose and very negative about everything.
Not what I needed, since I stopped have noticed that my appetite is better and now do not cry so much only when I need to.
Also not so negative as with the sleeping tablets.
On Robert Groth's blog read how he took too many painkillers over a long period but because they were bought over the counter he thought they were ok.
Me too with the sleeping tablets, they were prescribed so also thought nothing of it until had taken them for 10 months every night and one day caught sight of my pinched face and had a huge shock as I realised that I was becoming very dependent on the sleeping tablets and they were not having a good effect on me.
So stopped just like that same as with smoking cigerettes in 1999 and joints at the beginning of this year.
What works best for me is to stop right away no gradual stopping just decide and do it.
I have done well to reclaim my life but only mentally and not physically as I needed a wheelchair for getting about outside right away and within 3 months of diagnosis I could not walk down the steps anymore.
After 4 months was fulltime in wheelchair and after another 5 months couldn’t get out of the chair anymore and transfer to an ordinary chair or to bed or shower chair and needed help with everything.
Could still write and cook abit, simple things like like scrambled eggs or stir fry something prepared for me to use and could still use knife and fork and hold a glass or cup in one hand and eat with the other hand.
Had additional stress as we lived on the second floor without a lift so was stuck indoors for about a year only getting out twice a week to rehab when I was carried down the steps by the men from the mobility bus and their scary chair.
Sadly by the time we moved a year after diagnosis could not go out on my own as my hands could no longer function very well, could not use a key or open doors or even my purse.
I needed help with everything but could still type and pick up things and eat, could do things with both hands by the end of summer a year after diagnosis I had a catheter and could only type with one finger and needed even more help.
Now 2 years and 4 months later I am totally handicapped and need everything done for me.
One good thing now is that I found myself again and no longer feel useless and somehow less of a person and a woman, now I know that I am still the same person still as dynamic as ever and still the same sharpness.
Had to get through a morass of feelings to get here and I have by experiencing all the highs and lows of the last couple of years and thinking things through and refinding my sense of humour.
Now I have reached where I am now which is in alot of discomfort and pain and in bed all the time because of the nasty pressure sore and can now consciously enjoy everything that I have like Richie and his love and care and a nice flat, friends and our dogs and the fact that I have realised that my body is crap but my mind is fine, in good shape and life is good.
Taking each day one at a time, now look forward to our wedding anniversary on 19 December and then Winter Solstice and Christmas.
Recently been having alot of very good days,not my body just my mind, luckily the weather has been generally good too, most days blue skies and sun.
Makes me aware again how short life is and that it's the only one we have, don't know about other people but recall worrying so much about things that did not matter as if I had to be perfect and this is a dress rehearsal for life and not the real thing.
Aware too that the MS has progressed faster than we thought it would, wish I were wrong and hope that I am but if it carries on as it has then in another year I won't be able to sit up and eat and talking and beathing independtly won't be possible anymore.
Then I shall exercise my right in Dutch law and get my doctor to help me die, it's not something that I look forward to hate the idea of not being here with my darling Richie and all you lovely people.
Richie said that I was getting ready to die which is not entirely correct as I am doing everything to enjoy my lifec now and what I have which is lots and the last thing that I want is to die.
But I wil do the only diference for me its sooner rather than later and won'be a surprise thing.
Really wanted to get really old with my beautiful darling Richie was looking forward to it very much and still am.
My life amd my dreams are far from over, intend to really enjoy this Christmas.
A big thank you to all the wonderful people in the US who collected money for me recently which will help me to get an alternating air pressure wheelchair cushion.
They raised 600 us dollars which is brilliant and that will be put towards the 2,900 euros that the cushion costs here.
Thanks for all your support it is very appreciated.
Given me a huge boost and that has helped me to cope with having to be in bed for so long.
