I have come so far with living with fibromyalgia. I achieved my goal of returning to work part time. Had only 2 flares in 30 months not on any benefits. Last Thursday my husband collapsed at work with a stroke. Fortunately he has regained full mobility and doesn't need any help with personal care but he has aphasia and some words I can understand. The worse bit is his memory he can't make sense of written words and he just spends all the time on the sofa. We decided that as long as he could take over when I'm suffering fatigue and cooked the dinner that would help me. Fortunately I can draw on my experience of the emotions he is going through and I'm happy to give him all the support and care he needs. He's been home for there days and I have to admit I'm exhausted already it's so draining trying to understand him if he could write it would be great but he's lost that. My firm has said I can do flexible time and if he needs me I can go home. I am worried that I am going to end up going into a massive flare and then how will I cope.
I needed to get this aired and I know what a fantastic community this is.
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topsy4758
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Sorry to hear about your husband, it's very difficult trying to understand the words they try to say but it's just as frustrating for him not being able to communicate properly. Your employers are nice and considerate to your needs, lucky you to have such flexibility. Do you have any other family that could sit or visit your husband for a while to give you some much needed rest?
So sorry to learn of your Husbands stroke, I am carer to my OH since his stroke some years ago, it is very early days so plenty of time for good improvement in his condition if changes in lifestyle need to be made follow advice exactly, be ready for ups and downs and just as important make time for yourself and rest when you can. All best wishes to you and your Husband xxx
Hi topsy4758 , Glad to hear how well you are doing.Sorry to hear about your OH and hope he will continue to progress from his stroke. Wishing you both the very best. Peck.🐤
Poor Topsy and OH....So sad to read your post. I think you must not just think of your lovely husband at present but you must consider your own health. What would happen if you went into a flare up? Can you contact your Medical Practice, family, friends, even Social Services or Age UK to find out what sort of support you can get if need be. It will ease your mind and you don't want t be getting in a tizzwazz 'cos you will make your Fibro worse.....
So sorry to hear, topsy. Like others have said I agree, you need to think of yourself too. Hopefully your OH may make more progress and this will take the pressure off you. But if you both need help then you may need to have some outside help from Age UK. Do you get PIP or Attendance Allowance? Best wishes and hope you can take one day at a time - best wishes xx
So sorry to read your post. It is very early days for anyone who has had a stroke and it actually sounds he is making an amazing recovery the speech and writing skills can often improve immensely given patience. Have a look on the National Stroke Association website as they have some good tips for both you and your husband.
You are probably suffering from quite a bit of shock as this will have come out of the blue and as we know any type of stress does not help our fibro. As your firm as been so generous with their offer do take them up on it if you need to as getting exhausted trying to juggle all the balls at once won't help your condition.
Come on here and vent as much as you need to as sometimes that can be so therapeutic. Take care and let us know how you are both doing.x
I'm sorry this has happen ended to your family! You seem so supportive & know from your own experience...you are obviously strong, not having a flare-up in so long. What do you attribute that to? Was your life at a low stress level during that time? Please be kind and cautious to yourself to remain strong. Don't be afraid to ask friends/family for help. Glad your employer is thoughtful of you circumstance! Wishing you peace! 🌿
This is such a shame when you was finally getting your life back on track your poor poor husband it must be so frustrating for him, you must be worried sick about having a flare up now I wish you all the luck in the world for your hubby to make full recovery and I hope you don't suffer to much xx
I really am so genuinely sorry to read that your husband has had a stroke, and I sincerely hope that he recovers fully over time as it is early days yet. I can also genuinely understand your exhaustion as my wife has Multiple Sclerosis and I am her main carer and it totally exhausts me at times despite having a care team come in to help out. Of course I would never admit to her that it does as I love her so much.
I want to sincerely wish both of you all the best of luck, and please take care of yourself as well.
So sorry to read this and hope your husband continues to recover but you really need to take care of yourself. I can't really add any other Wise advice than that already offered just to say I hope you get the support you need x
Sorry to hear your husband's having difficulties with his health and it will have a effect on your health too but you will find the strength you need i battled on for years nursing my late husband all you can do is one day at a time.
Awww I'm so sad your OH has had a stroke. I really hope that in the future he'll regain his health. Please take care of yourself..gentle hugs to you xxx
Hi Topsy..You say your husband just sits on the couch...can he do colouring in? There are so many grown up colouring books out now and they do help in combating stress....x
Hello. I'm sorry to hear what's happened. Can you get any support at home? Like from social services etc? It's brilliant your work has been a great support but I think you need support at home too. Hope you don't mind me saying. All the best.
I agree with Em08 . I would think it is worth a phone call to Social Services to see if there is anything at all they can offer you.
I'm so sorry about your husband. It must be agonising for you watching him struggle.
Please don't forget to take care of yourself too. I know that it's going to be incredibly hard.
Call in favours from friends and family. You need someone to lean on too.
Come here as often as you need. We are your Fibro Family and will do whatever we can to support you.
Hugs. Lu xx
Hi wishing you both well.
If you approach MIND or other organisations they have people that can help even the council have adult services that know/have teams that if not there able to help can refer you to others like MIND etc.
I'm under my local adult health as have Autistic with Asperger's but i also had a stroke thing last year TIA/mild stroke i 'recovered' as in bodily function wise! but it's head that's not as memory/thought/concentration area is problem & feelings coming back in face still get twinges but trying to concentrate on things is hard get massive headaches if trying to work things out that are say complicated/im not familiar with plus don't read much now as used to stick my head i an book for hours also word puzzles was easy as could see words now can't do them.
So not easy dealing with stroke things as much isn't seen like Fibro etc but contact council etc
Plus should be able to get GOV help!!! your people like MIND will help
Not sure what area your in?
But your GP should be referring him to a stroke clinic as one likes he has had can be a lead up to a major one so please get some help.
Is there a stroke group in your area where he can meet up with others going through the same things? They will be supportive to both of you, and can maybe point you in the right direction to get more help.
If topsey your hubby has to go back to hospital which he should you can ask about day centres for his state of recovery. OT is required for many stroke victims and they normally are kindly and have loads of info. If good heavens he is not getting any OT then get him referred via your GP.
Stroke Association could well be a source of information/support. Main thing is you need 'me ' time. Work is not 'me' time. A relative or friend maybe could sit with hubby while you say went to hairdressers!
My friend has a hubby with onset of dementia and all the above advises would apply to her.
Hi Topsy, So sorry to hear about OH, you have been given some great advise not much I can add, do take care of yourself as well, take all the help you can get. God bless you both like someone said ,one day at a time is a good motto to live by.
so sorry to hear about your husbands stroke. i myself had a stroke last week as well. fortunately i realised what was happening and got all going quickly and was thrombolised very quickly and am now left just with numbness in mh left toes. though much more exhausted and a bit weaker in general.
hope you dont mind pushing the FAST guidlines
F ~ face is there any droop, or does the face look odd.
A~ arms are they able to hold them out straight with their eyes shut
S~ speech has it altered.
T~ time to act fast.
the quicker someond can vet to a stroke unit, the more likely some effects can be reversed, if the stfoke bas been caused by a clot.
ok, back to you. you should automatically have had his namegiven to your nearest stroke assocation , and they are there to give you advice and support as well.
i know it varies dependant or area but you should have been assessed for any follow up care. whilst i was independant in hospifal, i did have someone come out to the house to assess me there.
it sounds like he needs a speech therapist, but it will depend on the wait. it is possible for other parts of the brain to take over what was lost, but you will need special exercises, if he isnt interested in colouring then maybe tbe dot to dot books that are out there.
take all the help thatt is there. and if i can do anything to help tben shout, i might be a bit slow in replying but i will get there
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So distressed & feeling a failure
Had enough
Push yourself
Brother in hospital.
Trying to remain positive when you feel all is against you...
