Im listening.. alarm too deafening to ignore!

ok ok , Im listening!
I now fully recognise and acknowledge that I have foolishly compromised my quality of life for years trying to attend work, for the fear of loosing my job- to the extent that I have relinquished ALL leisure activities on my non -working days just to make sure I recovered enough and was fit for work,. I just CANT do that any longer.

After six years of continous struggle with severe back pain and full body spasms after a injury to my back .After numerous surgical interventions and many unsuccessful phases of phased return to work I was forced to reduce my working contact to three days a week, over three years ago .
I foolishly struggled to maintain this reduced 3 day a week contract for three long years , spending my non-working time recovering form the effects of working and severely curtailing leaisure activities in order to be “ok” for work.

After further failed surgical interventions and unsuccessful phases of phased return to work and a diagnosis of MS , I was not even managing 3hrs 3 days a week. It was at a point that I had to STOP trying to struggle into work three months ago and have been off sick since then.

I have foolishly compromised my quality of life for years trying to attend work, for the fear of loosing my job- to the extent that I have relinquished ALL leisure activities on my non -working days just to make sure I recovered enough and was fit for work,. I just CANT do that any longer.

have meant I have been unable to carry out many normal day-to-day activities.
I am no longer able to enjoy many leisure activities and I have had to make changes to my career path and reduce my working hours. Work involving standing has proved impossible resulting in change in role involving desk duties. Sitting for too long also triggers my back spasms.

Over the years I have put my commitment to work as the overriding priority.
Since 2003 have struggled to maintain a reduced working commitment of 23 hrs by severely limiting leisure activities for the fear of being unable to attend work. Latterly I spent my non-working days purely recovering in order to be well enough.
As a result my physical, emotional and spiritual standard of living has been seriously affected and diminished…from not being able to learn to drive, do my gardening, walk my dog to carrying out any activities that involve sitting or standing for too long.
Day-to –day activities that I took for granted when I was fit and healthy eg, ironing, washing up and cooking a meal are now an enormous struggle and have been neglected on order to preserve my physical status in order to work.

A more recent decline in my health due to the further deterioration of my back condition and the combination MS symptoms has meant that gradual return to my working 23hrs a week has not been possible.
And at the last point of the return to work programme a vastly reduced 3-4 hours daily over 3 working days is not attainable*
The day-to-day variability of my physical capabilities has meant frequent absences from work.
When I could get to into work I struggle through my working hrs* knowing that I would most probably be laid up at the end of the working day retiring to bed taking medications, unable to get myself a meal and take basic care of myself.
With a dual diagnosis and combined symptoms I am experiencing due to MS and back condition there is no further scope for compromising my quality of life and self care. I have realise that I have reached a point where I need to prioritise managing my health conditions and maintenance of my health above all else.

Operation cancelled

Today I was expecting to go for more surgery on my back ( factet joint denervation... again!) at 1.00pm today ( the last lot didnt work )
I just got a phone call from my consultants secretary to say that it has been cancelled because they cannot get the nursing staff together! bare in mind this is a private hospital, ( a perk of selling your soul to a multinational company).... my consultants sec is outraged that the hospital cancelled on the day.have another hospital appointment for this sunday.
I havent eaten since 7.00pm late night, , which i will pay for MS fatigue wise ,slept hardly at all and am tense as hell muscle wise which exacerbates my back pain.
Ive now got to explain to work why im not going in work today instead of going to hospital, which is probably what they will expect of me,but im in no fit state.I am on restricted hrs atm ( 3-4hrs ,3 days per week).
Got to make the phone call now which im dreading . im not sure how i feel atm.. but i do know i could really do without all the liasing im having to do with works occ health dept atm, just want to concentrate on of getting out of pain.
what im finding the hardest is to just concentrate on my health, there are so many work issues at the moment .

Feeling decidedly dodgy atm. Ms symptoms are doing my head in, there isn’t one day the same, the ms fatigue is really hard to deal with , and its rare to enjoy a long walk with willow recently as im either in pain or exhausted. I would have never believed that even going up the stairs or popping to the shops could wipe me out enough to need to sleep. At night I wake with numb arms and cramp in my legs and this is in addition to my back condition.

Im suffering cognitive problems too, which may or maynot be to do with the MS, as stress and depression guess cause wont be helping. But it’s scary when your brain won’t do what it used to do. I find it much harder to cope with than the physical stuff.
On the horizon in the next couple of months is the grand-housing conundrum, which I wont go into as its far too complicated, but it may well mean trying to coordinate the selling of three properties to buy two. How stressful it that chain going to be!

Finally after two years of threatened redundancy, we have been told that 400 jobs are going and 20 will remain. (Needless to say there isn’t a chance that I will be one of those 20) That’s fine, im trying to see it as an opportunity to do something different although my health isn’t going to allow me to work in any “proper job”.
As for redundancy, as i may have said before ( sorry)I had to go to reduced hrs about 3 yrs ago because of ill health and despite having worked for this company for 14 yrs in total (i.e. 11 yrs full time), they want to calculate my redundancy on my current salary. Which seems really unfair, it isn’t as though I left to have a child and decided to reduce my hrs because I could afford to, but because I was forced to do so due to ill health. So I’m going to have to try and negotiate a prorata basis for the redundancy, taking into account the 11yrs full service. My boss has asked me on several occasions if I could return to full time but am not physically able to, had I been able to, if I had done so for a few months when we were initially told there would be redundancies on the horizon, I would have redundancy calculated on 14yrs full time.
In fact I know people who did just that. But they could play that shrewd move because they don’t have the health problems I have. It sucks!
I don’t really have the energy to negotiate it, but I can’t leave it. Also Theres a possibility for ill health retirement, no guarantee, supposedly the only time it’s guaranteed is if you are terminally ill. but occ health said they will put a report together if I want them to as I have two chronic conditions
Thing is getting an idea of what that package might look like in comparison to the redundancy. what a mess.. its so hard to discretly get the information in order to work out which is the best option to go for . I don’t want to suddenly find I have been steam-rolled down the the ill health road, if its not the right thing for me to do. I don’t know about pensions and stuff, it’s a logistical nightmare! And im too exhausted to deal with it all. I cant believe im posting this, im not one for airing my problems so publicly and I usually play things down and seem to be coping, but im having a really hard time and I really don’t know how im going to deal with it all.
I guess this is what i started this blog for, a journal for me to express my emotions , and to offer others something. Im hoping i can be a bit more positive soon and offer more than my emotional ramblings.
For now i should just be conentrating on my imminent op, but my head is a whirling and im not supposed to get stressed as i can bring on an ms episode and exacerbate my existing ones!