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Well Done you Two,

Sounds like Jim is doing well Karen, Well done to you both.

Keep going Jim do not give up.

Likewise Karen xx keep going and glad all is going well,

I was incontinent when I first came out of hospital. Just call me pee the bed..lol

I stopped having late night drinks, last drink was at 9 pm and last wee at 10 or 11, interesting subject..lol.

Jim will get back with help So Good luck to you and Family xx

Love

WinB143 xx xx

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Hi Karen and Jim

I've come to the thread very late. But just wanted to say good on the pair of you. Isn't it amazing the difference a day makes. you won't be believe the difference when you look back in a couple of years time.

I haven't read the whole thread so ignore if this is a duplicate. But have you heard of the Princess Royal Trust for Carers? http://www.carers.org/ if the aren't in your area there may be a similar organisation. They should be able to help with advice, support, funding put you in touch with other carers. They can often be a lifeline.

Good Luck and Look After yourself.

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Hi Karen and Jim

Was lovely to hear about you both and the good things that have happened recently. The love you have for each other and from your family will get you through so much - My recovery wouldn't have been so quick if it wasnt for my family, it has bought us so much closer! Take care, big hugs x

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  • 4 months later...

Hi to everyone.

seems such a long time since i have been on here, dont have a minute to myself some days, who said there is only 24hrs in a day?? cant it be changed to more lol, not enough hours in the day.

well my jim is coming on leaps n bounds, physio 3/4 times a week for the last 16 weeks, got just another 2 weeks left, did'nt know it was only for so long thought it was there util you did'nt need it no more,at first you could see the improvment in him but that seems to have come to a standstill now,am now resigning myself to the fact i really dont think jim will get his mobility back but miracles do happen.

speech therapy twice a week but thats stopped now for a while to give him a rest from it. speech is comin on, he can repeat anything you say to him just has difficulty finding the words, so frustrating for him, i only have to go to say a word and he knows what it is, just needs a bit of a prompt, i do wonder if he will ever get the abbility back to say it himself without prompts, think its something called dyspasia??????????

only just this week got his benefits sorted out, dont know what we would have done if he had'nt been getting paid from work, relly feel for the people that dont get paid when off sick, i would have been out of my mind with worry by now.

work are going to finish him on the grounds off ill health so am just waiting to see the payoff package they have for us and what pension we will get, keep telling him "hey not bad jim retireing at 49"

i am concerned at the amount of time jim is sleeping, he has a good 10 hours at night but still sleeps on and off most of the day, hes asleep more then he is awake, take today, slept from 10 last night till 9 this morning, had breakfast and actually fell asleep whilst eating it, woke at 11 (1 1/2 hours sleep) awake for 45mins sleep again till 3, awake then till 5.30 sleep till 7, awake till 8 and still asleep now so not awake much. his consultant did say he could sleep alot but i am a little concerned, has anyone else came across this with either themselves or someone else.

had my little ellie stay with us last night the first time since jim came home, she is so protective of her grandad, she'l go upto him and cuddle his "poorly hand" as she calls it, she even pretends to give grandad injections in his hand to make it better.

well life seems pretty good at the moment under the circumstances, i still have days when i have to walk out of the room so jim dont see me upset, i sit sometimes and my mind wanders and i have to shake my head as i still cant believe what has happened. there was a time when i thought life had stopped as we know it but now i just tell myself its just going in a different direction.

the best part of my day is when i say to jim "i" and he finishes it off with LOVE YOU

Will try to keep in touch now that things seem to have settled down at home

take care everyone

karen n jim xx

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Hi Karen & Jim

Great to hear that you are settling in at home & that finances are being sorted (although very slowly :roll: )

In the early months after SAH I slept eccessively too, probably not quite as much as Jim needs to just now though. I slept most of the day & for a good 10 hours at night too. I can remember having showers & being so tired by them that I would crawl back into bed with my hair still wet as I had energy left to do anything about it. I also remember being too tired to eat meals that were cooked for me, literally the effort of lifting my fork & chewing made me so tired I would have to leave the food and go back to bed to sleep. Try not to worry too much about the tiredness, I think most people on here have been through similar & it does improve in time.

Good to have an update on how you are both doing. Take care.

Michelle x

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Hi Karen and Jim,

Glad you are both doing well, it has been so good to hear how Jim has come on. It brightened my days xx when I heard of your speaking about Jim moving on.

Now the pair of you go out and have a coffee(decaff).

The next move is your 1st row since illness, that's when I knew I was better ha ha. hubby got annoyed at me. lol

I swore at him.

Have you had a sing song yet?

Keep going Jim your wife has been a brick xx

Onwards and upwards the pair of you xx Good luck to you and Family

Love

WinB143 xx xx

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  • 1 month later...

hi everyone, been a while since i have been on here jims definatly keeping me busy.

want to ask for some advice, i have been looking at circulation boosters as jim keeps suffering with water retention to his right foot which is the side he has no mobility on this is also causing him have a bad cough, doctor has checked his chest and said it is clear but this is why he's coughing cos with him having no mobility he gets water on his lungs.

What would be the benefits of buying a circulation booster? the doctor could'nt advise me one way or another, dont want to buy something that will do anymore damage.

Have just forked out another £2,000 for a powered wheelchair, well were having some fun with that, only had it a day n jim got the arm rest stuck under the handle of the larder unit in the kitchen and we had to reverse it out which caused a big rip in the arm rest and all he had to say was "for f--ks sake" ha ha

we laugh every single day cos if we did'nt we'd cry n never stop.

was talking to my avon lady's hubby the other day and was telling him about jim and he told me the same thing happened to his wife 18 yrs ago and he says she is still getting better even after all that time. she did not walk or talk for 6 yrs then one day he said everything seemed to just click into place and shes now 100% better, so there is some hope but i will never give up on my jim he means so much to me.

was thinking the other day how much i miss him talking to me then thought hey woman what you crying for he's still here with you.

wait a minute, yep thats big jim shouting me "kaz" not forgot how to shout me.

hope your all well

karen

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Hi Karen an Jim,

I slept a lot when I came out of hospital, but after I had shunt in I used to sit i chair and think "Win tapdance" okay I knew I couldn't as could not stand up without help, but then I thought if I can move my feet then I can walk.

So I sat there doing a tappety tap with feet and I asked my Al for a zimmer frame for Christmas pressie.

He got me one and I am so glad he did, I started to take myself to toilet got my dignity back a little.

Hope Jim goes from strength to strength and with your help he will, (I was wondering how you two were doing only the other day).

Whatever people say keep pushing and doing what your doing, (as I said earlier I was told I'd never walk but a 100 yards makes a difference.) You are doing Great the pair of you xx

Good luck

Love

WinB143 xx xx

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Hi Karen, hi jim. Glad to hear things are moving forward albeit slow.

The power chair incident made me giggle, I had visions of jim flying off in it. Good to have that independence even if the larder jumps out at him! :lol:

I asked my nurse about circulation booster as I used to use one prior to my SAH as I have reynaulds which is a circulatory thing. Anyway, she was unsure as to whether the electrical pulsing would be a good thing so I gave mine away:shock:

I have replaced it doing a with a quick shoulder or leg massage esch night. Now I am able to do it myself as I have the mobility and I don't want to add to your load but I think a good aromatherapist would be able to create a safe blend that may help with the water retention and circulation. Anyway it's just a thought.

Take care and keep laughing together

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I agree with Daff, massage may be the way to go. We all know that to move your legs is a good way to keep the circulation going.

I have an electric massager that warms slightly and use it for my leg cramps, a different matter I know. It is just a round pad that vibrates gently. It was not expensive and may help.

I have found out over the years that it is easy to spend pots of money on aids that turn out to be totally useless in spite of their claims.

None of us are medically qualified so cannot really give advice. I suggest that you go back to the GP or a Physio and ask again. Also request that Jim has a chest xray as a stethoscope does not always pick problems up.

Re the wheelchair, did wheelchair services assess Jim? Did you get a voucher towards it? You shouldn't have to pay for one totally on your own. There is help out there via your GP.

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hi Karen and Jim congratulations your progress so far Karen I hope your taking some time out for yourself I would talk to the gp about jims leg it could be lymphatic fluid build up he can refer you to a lymphatic nurse either at the hospital or she can come to you lin had it by massaging the foot and leg you can help disperse it but you will need to be shown how to do it or get someone in from the support team

I wouldn't recommend the circulation booster it can do more harm than good if you can talk to the lymphatic nurse first I am really chuffed that you are both doing so well keep up the good work and don't worry about Jim sleeping so much lin can sleep for England I think its because Jim and lin are using so much energy recovering internally it drains them so much keep up the good work girl

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Thanks for your replies and advice, dont think il bother then with the booster,save myself some money.

we seem to have been left on our own again, no physio, no speech therapy, not even seen jims social worker, only seen her once since we came home. physio n occy health knew i was getting a new riser recliner chair and no one has told me we can get help towards these things.

they did tell me not to get a powered wheelchair for jim as they said they did not think he would be able to use it but me being me took no notice cos he had one in the hospital and managed fine with it.

jim is still adament he does not want to go out but some decisions have to be taken by myself so hes going out today as its a lovely day, just in the garden to watch me cutting the grass but i think a bit of fresh air will do him good.

so if your sat in your garden and hear a big **** OFF then you know its big jim ha ha.

karen xx

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Hi You 2 xx (Karen n Jim )

Yes I heard the eff off words, thought it was my Al telling me to do it lol.

You are doing well Karen, us SAHers can be awkard, mean and watery headed but we do appreciate you and our

families and what you have all been through.

We slept through most of it, while you and all SAHers families went through the wringer emotionally.

Don't tell my Al and Sarah I put that shhhhhh j/k.

Keep Well You two and tell Jim to be good.

Be Well Both and have a rest Karen x

WinB143 xx xx

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  • 11 months later...

Gosh it's been so long since I have had the time to come on here, just been reading my thread and I can't believe how far we have come. 2 years in July.

Some things are still the same, Jim still has no mobility and very little speech, but in himself he has come so far. He has now come to accept what life changing things have happened and is now so much happier in himself which I am so thankful for.

I can honestly say I don't think anyone could have handled what has happened to them as well as my Jim has, he has a smile for everyone I never see him unhappy.

NOW FOR MY BIG NEWS

WE GOT MARRIED 12/12/2013 after being together for 23 years I finally made an honest man of him lol

It was Jim's 50th birthday and was such a special day, don't think there was a dry eye in the place even the registrar was tearful, and he was word perfect, we practised so hard and he was looking at me all the while so I could help him through my tears, was such a magical day and will cherish it forever.

We have booked a holiday for June this year, a place called mablethorpe (never heard of it myself) and am so looking forward to it, even a change of scenery will be good.

This is something I really never thought I would have the courage to do as I am so organised at home everything is done a certain way that to go somewhere else that will not have the equipment I have at home was something I did not think I would do, but do it I am and I know I will manage one way or another. I feel so confident in. Myself now.

I have had an extension built with a wetroom and it's lovely and makes things so much easier for me and Jim, that was finished a month ago so the house is just getting back to normal.

Had to pay for the lot myself as I could only get a grant for a lift to go upstairs but this would have still not made things any easier for us so thought *** it we got money in the bank for a rainy day and the rainy day is here so spend it, after all what's the point of it being in the bank if we can't get out to spend it.

I can tell you Jim wasn't to happy me spending nearly 20 grand on it but I soon talked him round, got nothing left mind but does it matter, no.

Anyway will defo not leave it so long now my head is in the right place.

Love to you all and hope your all keeping well

Love Karen & Jim xx

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Congratulations Karen & Jim on your marriage :):biggrin:

Wonderful news, so very pleased for you both xx

Glad the wet room has made things so much easier and wishing you both a fabulous well deserved holiday in June :)

It is wonderful to hear how well Jim & yourself are doing !

Take care & keep in touch xx

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Karen and Jim. So thrilled for you both that you celebrated your relationship and got married after the shock and trauma of the last year or so. I bet it was a lovely day. It sounds like he is doing so much better and that wet room is a fabulous idea which I am sure will ease the every day ablutions.

Hope everyone is doing well. The routines will help you and Jim. One thing I learnt from neurophysch was the importance of having regular ways of doing things as it saves using cognitive energy so you have more left to heal or for dealing with the unexpected. So your way of organising things will be helping him and not just you !

Take care, great to hear from you.

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Karen and Jim,

I've been wondering how you two were getting on.

Good to hear from you and the good news.

I did a tap dance while sitting down to my sisters and then I thought if I can move my legs why can't I

walk, so I did and so will Jim. baby steps at first xx

Glad you are both happy, Keep well you two xx

Love

WinB143 xx xx. Forgot this bit Karen, I have an electric foot pedal well it turns your legs around like in

cycling. Good for legs that haven't been used in a while and you can do it from armchair.

Edited by Winb143
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