feeling low about how you cant manage, help please

Hi, I had a subarachnoid hemorrhage last month and have spent a month in hospital in London, I am now home after some brain surgery and I am finding things tough. My memory is terrible, I am unsteady on my feet, I am on statutory sick and I am worrying about the mortgage, I feel like a 2 year old and like I am being treated like one, no work, not allowed to cook, walk anywhere.

I am getting sick of the recover, it seems slow and like I am making no progress, can anyone tell me this is normal who is not just humouring me and has gone through the same thing.

21 Replies

oldestnewest
  • it is very normal a month in, is no time at all, things change and you dont always notice the change, things will get better. its good that you got help, i am stubbornly independent to my detriment too, so it is frustrating people doing everything for you.

    but it is early days, i am not humouring you, i am 17 years into mine, and life is a struggle still, but there are others here who have no cognitive problems, just physical as a result, so you have to remember that it affects everyone differently. so no one can give you a definitive answer

    recovery can be painfully slow and things do get better.

    if you just need to chat then contact Headway on 0808 800 2244 or email them helpline@headway.org.uk they can explain things simpler than the doctors and offer support

  • HI

    Although I haven't had exactly the same thing I have also had similar major surgery recently. I think you need to give yourself time. You have had such major surgery and it is a shock to your system and really hard, especially when you are sent home from hospital as it's such a shock and it hits you what has happened. Just take one day at a time and be proud of yourself for coming through such major surgery...Your body needs time to recover and I felt like I wanted to do more than I could do.. but you must try and accept your limitations just for now. Maybe try and treat yourself to something nice.. (chocolate!)

  • use common sence you have just had surgury

    dont do to much as raises blood

    goto bed for a year or till you feel better

    take your time with things

    let the others in your click do things for you

    untill you can do it for your self

    chill out take y time

    dont want your brain to go pop now do you

    things will and do get better with time

    have a good recovery

  • Thanks everyone for your answers, just walked 10 meters and almost fell twice, lol, will try and have more patience, its good to know you are not alone in your feelings and others have been there and got through it, cheers all.

  • anytime mate, we may not always have answers, but we know what you are going through

  • yes this is as normal as I found it; for a long time it felt like two steps forward one step back, Your not alone

  • I know you won't feel like it now but you have done really well to be home in a month. My mum had a SAH and was in hospital for approx 8 weeks. Then 8 months later my Dad had a catastrophic SAH and has been in for 7 months, he is still unable to talk or walk. Please don't beat yourself up, let others help, get lots of rest, you've had a brain injury, there is plenty of time to do things for yourself and you will, but a month really is nothing in the grand scheme of things. Take care of yourself, best wishes x

  • Long and slow, slow and long...put your life on hold to deal with each problem one stage at a time, you'll save yourself alot of grief in the long run.

  • Being on SSP stinks but have plenty of items to put on ebay, that will help a little. but it is not just finance, what to do with myself at home all the time, lol Maybe I will do some baking when the other half is at work and my mother is not here looking after me.

  • I had a SAH a year ago, came out of hospital after a month could not walk or write. Then spent three weeks in bed resting and slowly learnt to walk, mom came over every day just to check I was okay. I had gone from managing a team working 45 hours a week to sitting around all day bored. This site was not available this time last year, like you I sorted a lot of stuff out to put on eBay. This really helped me it was a positive and gave me something to do during the daytime. I had never been off work before and I felt lost, along with not feeling well. I know its hard for you at the moment but given time and learning to listening to your body you will make a good recovery. I am now back at work only part time but I got back, I still get very tired and have had to change my life, I appreciate every day, good luck keep your chin up

    Terry xx

  • A month after my SAH I was still in hospital and walking was a difficulty. It was another month before I had practiced sufficiently to take a walk outside with a physio on either side.......then after several months more, as my brain slowly relearned the knack of delivering messages to extremeties, it was time for the proverbial 'walk in the park'.

    It will come, but impatience won't make it happen any sooner. Relax and look forward to the time ,soon, when you can do all the things you want to do, You've suffered a serious trauma and your whole body needs rest,rest and more rest.

    It's just over a year and I am only now starting to get back to 'normal'......Oh and my memory has gradually improved . Naturally, everyone progresses at different rates, but positivity can also be a great healer.

    As you're probably aware, CAB or Headway will be able to advise you on benefit entitlements

    Be good to yourself. Best wishes, cat x

  • Ive been through exactly the same thing apart from not having kids and no mortgage.

    Mine was back in 1987 when people didnt have a clue.

    I never imagined twhat id be like today.

    Back in 87 i used to have to hang on to things to get about. Walking across an open space was unthinkable.

    You DO get back but it takes time. Excuse the pun but you have to walk before you can run.

    Youll be fine

  • Hi, Had my brain haemorrhage 5 plus years ago. It has been a nightmare of a journey for all concerned. You are in the very early days of your injury and yes! I know (from experience) it is awful, strange, tiring, difficult, lonely and lots more... We have gone through so much and now we can see the light at the end of the tunnel instead of the train hurtling towards

    us. Phew!!! We have learnt so much about so many things, from appointments with Doctors, hospitals and the many professionals we have had to see talk to etc etc... We may not always get it right but we try. Oh! do we try :)

    If I can help answer any questions you or anyone else might have, I/we are very happy to help. You can private message us

    Take care :)

  • Well I have been as positive as I can be today, had a friend round for lunch and made rolls, ,lol, very adventurous, but the pain is horrific today, 9pm before I can have any more pain relief, doctor gave me 100 tramadol, forgot to ask if I could try fentynal, but will ask next time, partners father was great ferrying me round, so glad I purchased a prescription annual card for £100, going to save me a fortune, 4 scripts today.

  • What's the horrific pain......is it headaches ?

  • It was, I was scared it was another hemmorhage, I thought I was going to die, I tried distraction, I took my pain relief all day, nothig worked. I went to bed and woke today and it is much better, but didnt think I would see today last night and do not want to run to hospital every time the pain gets bad, I might get blue lighted to london and have to stay there a week again. My head is much better today though, it is early days.

  • Hi, I had my SAH about 6 weeks ago now, I have had two rounds of coiling, spent time in ICU and HDU and have been n the rehab unit at Frenchay now for 5 weeks. I am fed up, butthey are determined not to let me home until I can live pretty much independently with just a few adaptions. I was told that 3 months was nt long or recovery, it's going to be at least another 6 weeks or me but I'm getting there slowly.

    Helen

  • Hi Helen,

    Sounds like yours is worse than mine, my pain is severe though and hard to take at times. I hope you get home soon .

    My pain today is good, only 3-4 on the 1-10 scale, although I was 9 - 10 last night, really was not sure if having another SAH or if I would awake in the morning, it was that bad.

    I am going to ask for Fentynal patches, because they might help, but not sure if I will get more pain relief as already on 4 different pills

    Heres wishing you a quick recovery Helen.

  • The headaches can be really alarming but at around the three month mark I,personally,found they started to ease. Try not to tense up when you feel one brewing......& drink plenty of water.....keeping the brain hydrated really does help.

    Best wishes. x

  • thanks, I will try more water, I did in hospital, but being naughty and having a little "cough cough" brandy.

    I thought a small one, even on the tablets would not hurt, we had valentines in a hospital cafe, jacket spud with cheese and beans so tomorrow a bottle of red and a few steaks, will make sure i take 2ltr of water during the day though.

    thanx for the advice.

    Karl.

  • Hi,

    Just to update, I am alot more steady on my feet, just a few clumbsy moments, but nothing like I was, I can walk to the shop 15 minutes away, usually 10 but I am a little slower, and sometimes get confused and walk the wrong way.

    I am reading better, my eyesight is better, I have cooked 2 meals now with minor assistance and a pudding.

    My memory is still bad and i am still doing silly stuff like putting shaving gel on the toothbrush and then calling my partner and saying I put shaving FOAM on the tooth PASTE.

    well I do feel I have made some progress.

    Cheers for all the support on here guys, have a new issue with swelling of the face but seeing the doctor about this latter.

    TTYL

You may also like...