keeping in touch with everyone

Hi everyone,

I've been reading over the responses to my first post and thought I should touch base and update.

I haven't been on here in months and started to in the last couple days for some motivation and encouragement. There has been some progress( practicing to focus on the positive) and a lot of setbacks in the past few months that has left me so exhausted. Been getting lots of assessments to get rehab\therapy started. Have seen an Occupational Therapist twice and been discharged from a speech and language therapist. On my own when I can I do little crosswords and memory games. I have so many delays and everytime things begin to start to go in the right direction it all goes haywire. My partner is exhausted as we still do it all on our own and its crunch time. Also I've had 2 friends in the past week who thought I would be back out to work already. I started to feel ashamed then I thought to myself I was thinking like that 6 month ago and realise not just yet hence getting all the info gathering. My goal is to be in some sort of part time work before the end of year at least cause life goes on. In May it will be 2yrs since surgery

I've had another upheaval in my life which might mean me starting the whole process over again. new GP, new area,new help. Right now it seems a huge challenge amongst other things. I do not know how I'm doing all this stuff on my own. It is very stressful which is not good for my health. It is hard. I still have no outlet or routine which is what I'm working towards and now major upheaval. I am yet to find the positive in this new upheaval and I'm afraid and worried. the few friends I have are all caught up with their lives and stuff and ones I shared deep stuff with I have stop saying anything to them about what I'm going through and I just talk about the positive.

There I've got some stuff of my chest.More will come out eventually. I hope I don't come across as complaining, cause I am not and I know I have a lot to be thankful for.

How are you all doing?

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5 Replies

  • All, I have been feeling very low cause its one thing after the next as soon as I pick up. This last upheaval feels too much. what do I do.

  • Hi Wannagetbetter, the motivation is the hardest, is work realistic yet? You have to make sure you're ready, don't feel pushed into anything because other people thought you'd be back to work, people are surprised I'm not driving yet but things will have to dramatically change before that's likely to happen, I wouldn't trust me at all.

    I sat down to do a painting by numbers, I use things like that for my fine motor skills, and was totally overwhelmed by the confusion of numbers, but I do a bit each day and it's getting better. When talking to my sister she said a child would be about 9 doing one of those so it's good, cos I liken my brain to a child's, having to relearn things, some the pathways aren't damaged so that comes quicker, but others take a bit longer.

    2 years is still early in the scheme of things so don't be too hard on yourself, I'm just at 2 years now and even ran half way up the stairs the other day!!!!! I still have trouble staying upright if I bend over!!!!!!

    Manage things for you not everyone else, it's your life live it to suit you, listen to your body pace yourself.

    I still have problems with sudoku, but it's getting better, I can beat them on countdown sometimes with the mental arithmetic!

    Take care now, Love Janet xxxxx

  • I know work isn't realistic right now but my aim is to be in part time work by end of year at least. I have come from thinking that I was going back to work part-time last year. I started to realise I am not quite right and the neuropsych report proved it. I am so not used to this. I'm not confident or capable of working in my previous fast past environment so have to experiment with different jobs by volunteering. I have no clue what kind of job I can do when I have worked in one sector most of my life. Thats oneof my dilemas

  • sounds as though you're doing well, one thing I have been constantly told by my consultant is to factor in time each day to rest. While this might seem silly I agree with her, if I do not factor in time to rest I either keep going until I make myself ill, or feel guilty that I'm resting midday. Back in the early days when I constantly made myself ill by not resting my consultant wrote a prescription; 'Stephen must rest in a quiet room each day'. Maybe 'we' forget that before our illness/accident we like everyone else shared the good days and bad, so I say it's ok after an illness to still say 'had/having a bad day, just as it's ok to say when were having a good day. Perhaps we become too analytical? I had tremendous pressure put on me by my employer to return to work, with threats of dismissal. One of the hardest fights for me was fighting my employer, a local authority, with my consultant refusing to sign me off and occupational health stating there was nothing wrong with me. It took 2 years fighting, and then the day before a court hearing my employer settled out of court along with a letter of apology. Since then I have focused more on me, and realise that as much as I want to return to work I am not capable of maintaining the speed and accuracy of my job, so had I gone back would have failed, which would have been disastrous for me emotionally medically and financially. Since retiring on ill health I have worked as a volunteer for my church twice and am looking forward to next becoming the health and safety officer for the church. Carrying out voluntary work has demonstrated to me that if I had returned to work I would have crashed big time. Whereas being a volunteer I can take on as much as my condition will allow, while never loosing sight of my goal of returning to paid employment. PS you do not come across as complaining I think you're doing just great

  • Thank you for your replies. I did a lot of pushing to get the help I needed and now when it is all coming together things have gone wrong. the next stage with the help in place is to volunteer. I have to find faith that something will work out. I have no routine in place as yet and that's fustrating. Now I might have to move to new borough\area and start the whole process again from square one. I'm just fustrated that I have to rethink and replan everything and have a limited timeframe in which to do so. I will be fine, just panicking.

    Brighton, I have made a note about factoring rest time. do you manage to do that everyday?

    I ask myself sometimes why aren't we allowed to recover peacefully with no stresses. I make a point in not making myself stressed out. I'm not as bad as before and now I have an outlet on this board. getting my thoughts out. I kinda wanted to have all my help and therapy started already to help myself when I have to move.

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