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Setback to recovery


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18 months post SAH I was at last feeling as though I was nearly better. I got the chance to do some temping work, 5 hours a day or thereabouts. I decided I could do it so long as I did nothing else apart from work and that seemed to be ok. Initially it was just for a week but it went on longer and after about 6 weeks I suppose I was doing extra things around the house etc and I reached a point where I could not function any longer. I got a terrible headache, stiff neck, pains in my eye, dreadful fatigue, all the symptoms that I had had for many months after SAH but had, I thought, gone away.

I was sent home and spent the next 4 or 5 days in bed with the symptoms continuing. Now 10 days later I still get the same symptoms as soon as I exert myself again. It has frightened and disappointed me, I really thought I would be able to cope and for the first few weeks was really proud of my achievements. It has left me feeling a real failure and don't suppose I will be asked back to work there again in a hurry as I let them down(it is somewhere I loved working in the past).

Has anyone else suffered a major setback like this so long after SAH when recovery was going really well? It has really set me back to where I was a year or more ago.

I think everyone just thought I couldn't handle the work and got stressed but that was totally inaccurate as I was doing a really good job and enjoying it.

Ann

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Hi Ann' this is my first time on here but all i can say is i understand completely.I went back to work slowly after 3 months sah everyone said it was too soon but ie never been one to listen (very stubborn ) i was in and out of my place of work for months. go in and then get sent home feeling dreadful. in may this yr i went back in to hospital for more surgery clipping this time with craniotomy and ive learnt my lesson im taking my time going back as i get two good days one bad etc very frustrating and everyone telling you you look so well makes you feel like a fraud. Take one day at a timeand i think we need to be grateful for the good days and accept the bad. Hope you are getting a few more good days soon all the best caz x

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ann

dont you every say you are a failure and have let people down you have done so well in your recovery and i dont think the people who you were working for would say that either ,

all you have done is try to push the boundaries a little bit more than normal which is very admeiral but as you said you wanted to try it for a week or so but you did what all of us would do just because you enjoyed doing what you were doing you ignored your own guidelines naughty girl lol

you have learn a very important lesson that is slowly slowly catchee monkey have a rest then start again and this time abide by your choice to do a couple of weeks then rest this is the only way you will achieve victory and full recovery

SO DONT TELL US YOU ARE A FAILURE BECAUSE YOU ARE NOT A FAILURE you have done more than you expected you have learnt a lesson listen to your body sweetheart slowly slowly catchee monkey and so well done ann because you arnt where you were a year ago your miles ahead smashing

there is one saying ive had since spending time in hospital with spinal injury dont go down get angry this helped me through one sort of nightmare by getting angry gives you the positiveity to move on well done ann so no more feeling down you have done so well rest and move on when the body tells you take care sweetheart and dont run yourself down

Edited by paul99
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Hi Ann,

My experience of recovery is the same as yours. I'm still experiencing setbacks, 4 years on, if I overstretch myself. As for working 5 days a week, even with short hours, I really don't feel that I would be able to cope with it on a permanent basis. Working 5 days a week, would probably mean, that my weekends would be non-existant, as I would be fit for nothing.

I do find that I'm still having to pace myself, but it's become a way of life for me now and try to accept it. I feel that my recovery has been exceptionally slow, even though my Consultant recently wrote the wording on a letter, that I had made "good" recovery ..... which I suppose that I have, given what I was like when I came out of hospital.

Ann, when you're feeling tired and experiencing pain again, then it is frightening. I wasn't too well last week and ended up with a stiff neck and the normal muzzy head, like being in a fog .... However, at this point in my recovery, I know that these spells will go, if I'm able to rest up and put the brakes on for a while.

Would imagine that I will still continue to overdo things and still continue to have to put up with setbacks, because of it. I like to be able to push the boundaries and kick against what's happened to a degree, as I don't think that we know what we can achieve, unless we do that on occasions.

I feel that you've done extremely well with being able to work and you certainly haven't failed .... As for letting people down, well I've felt like that on many occasions, when I haven't been able to manage to do certain things, in a working capacity and on a personal level. I also occasionally temp for my old firm and I'm totally honest with them now, with the amount of hours that I can comfortably do. They seem to understand and still ask me to cover the odd holiday, but I've learnt to say "no" a lot more, if they expect too much.

Ann, we can only try and see what we're able to cope with ...... it's better to try and achieve something, rather than sitting around and doing nothing, because we think that we're going to fail. You've also said, that the work was initially only going to be for a week and then it just continued on ..... so you achieved a lot more than you thought you could and yes, you should feel proud.

Recovery is very much a learning curve and trying to get the balance right. You know that you've been able to work, but may be you just need to state the maximum hours or time period that's comfortable for you and doesn't hinder your health? I'm sure that you will be asked back to work, but hopefully you will know when to put the brakes on.

Hope that you're feeling better soon ......xx

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Hi Ann

I also still suffer setbacks as well especially when I overdo things. It took me quite a while to get my work/life balance right. I now only work 20 hours over 4 days and have an understanding with my employers that if I have something planned for a weekend I can take extra days off either side.

I use my Annual Leave to ensure that I have a long weekend at least every 6 weeks and this allows me to re-charge my batteries.

Never feel that you are a failure you're not. The hardest thing we have to deal with is coming to terms with ourselves post SAH but as Karen has said we do also sometimes have to push those boundaries even though we know the consequences is the dreaded fatigue and awful brain fog.

Hope you recover some of your energy soon but be kind to yourself and rest if you need to .

Janet x

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Thanks guys, I knew I could rely on you to make me feel all is well!Like you say Karen it is possible to work and do nothing else which is what I had been doing for the first few weeks, it was as soon as I tried to have a life as well. Anyway, I have learnt my lesson and will not overstretch myself to that extent again.You seem to have the balance right now Janet. As for the toy boy idea, I have a very young looking husband who could easily pass for that role the way I am looking (old and haggard!)at the moment!

Working in a medical environment colleagues were very concerned, physio passed my desk and said she could tell I needed to stop and made me go home. Others were upset they had not actually noticed the weeks go by and that they had allowed me to overdo it.

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Hi Ann,

It's good to hear that you've got good work colleagues around you, that care.....

I'm lucky in the sense that I don't need to work, to pay the bills and I feel blessed ... it certainly takes the pressure off. However, our lifestyle went down pretty dramatically after the SAH, but we've adjusted and all is fine.

Life post SAH can seem like a climbing a huge mountain, with the adjustments that we have to make and I've certainly had plenty of times, where I've been disallusioned, fed up and just downright miserable. Trying to strike the right balance does take a long time and I only feel as though I'm starting to achieve that now .... over 4 years post SAH.

Try not to beat yourself up and find the positives with what you've achieved....bet that you're doing a whole lot more, than you were 6 months ago?......

Put your feet up for a while and give yourself a well earned rest....xx

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Guest ElaineW

Hi Anne - I obviously can't relate to what all you guys have been through and your challenging roads to recovery but I do feel very strongly that you are certainly not a failure, far from it in fact, I know mum still gets very down, low and frustrated like you all do and many a time she says to me "I am a waste of space". You have all shown the biggest thing of all - determination and each and every one of you has done amazing. You should feel nothing but pride.

Elaine

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Ann, that must have made you feel rather 'helpless' but you aren't you know , and I doubt very much if your true friends would think that of you! Personally I have noticed you being very supportive of other members, now that's a good thing but I guess we all have to learn to slow down even 'old retired folk like me!' Very very easy to go too far and push too hard. You will get there, I bet:-D

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Hi Anne,

I think this is a common problem cos I did exactly the same! After about 4 months I returned to work, as a primary school teacher, on a phased return. Within 6 weeks I was back at full time hours. I lasted 3 months before I was off for 5 months with exactly the same symptoms as you. When I eventually felt like I could return I went back pt (as advised by OH) but still on a phased return because school wanted me back to ft ASAP, I lasted 3 weeks and then was back off again. After being off for 3 months and having sen the consultant and many docs, I was forced out of teaching as they thought that it was far too much for me and suspected that it would be forever.

I still work ft in education research and still find it very difficult to carry on. As you may know I had lots of trouble with my company over my illness and supposedly other reasons. I eventually took a demotion to keep them quiet. I still get wiped out one weekend in about three with exactly the same symptoms.

Since mum has been in hospital these have been worse but I have another docs appt for Tuesday. You are definitely not alone in wanting to get back to 'normality' and overdoing it. I wish I had your work colleagues though :-)

Love and hugs

Laura

xx

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Yes Laura, great colleagues are one of the reasons I love working there. Having been a teacher too most of my life I decided to leave teaching after a very serious illness a few years ago, the best thing I ever did as I have said before. After volunteering at the Hospice for few years I was asked to do holiday and sickness cover in a number of different admin roles and have always loved working there. i have been offered permanent roles there but prefer to be flexible.The staff are fabulous to work with and have been supportive since SAH. They had made me promise before this latest stint of work that I would only do what I felt able to do but of course, as a perfectionist, I felt I had to do every part of the full time job but in part time hours! Stupid really, but felt so pleased that I was able to prove to myself that I was still super efficient!!!! Mmmm, that one backfired somewhat. I was part time so as not to get too tired but then worked doubly hard to complete everything that I would have done if I was doing full time hours, great logic of mine. Anyway, thanks for all your support. Going in for just two hours tomorrow to train someone in part of the job so looking forward to that as it is the only hours I will do this week.Better get to bed or I will be too tired to do that.X

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Good luck Anne, got my fingers crossed that this week will prove a breeze xxx

Remember to rest as well. I'm a perfectionist too and was trying to gain promotion at sch, stupid really cos I was finding it really difficult as it was! Oh well, we live and learn!

Let us know how you get on

Love and hugs

Laura

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  • 2 months later...

Feeling down in the dumps today! am still frustrated that I'm not recovering as quickly as I would like I'm 14 months post SAH. Still finding it hard to come to terms with not working! I finally retired from my post. I cant get used to not working! I cant multi-task anymore! I know I need to get a grip and get on with life but find it very frustrating because I used to do so much and be so fit! I do still go to the gym but progress is slow!

Sorry for having a moan, will feel better now!!

Caroline

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You have a moan its allowed.

I must have missed this post orig....but hey I cant multi task now either and everything is slow, but so I get there just not like I would have or would like to

its also allowed after what you've been through....

tomorrow's another day I hope its a better one for you.

take care

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