Since my recent flare up I am finding it impossible to walk without pain unless I go very, very slowly; and even then it sometimes leaps out at me. I know it's only been just shy of 3 weeks but I have really been pacing strictly, no longer than 20 mins on my feet then sit down for at least an hour. I often spend the afternoons in bed.
What concerns me is that my past experience has been that I never get back to where I was physically before. What does that mean for my mobility this time?
I have been considering getting a wheelchair; not an electric one since they are too expensive. Am I jumping the gun here or being realistic? I certainly don't want to be tied to a wheelchair but is that the only way I can have a life?
My husband is resistant to it since his first wife was in one with a back injury and it brings back all those memories for him. It would also curtail his activities, sailing, walking, climbing, and I don't want that for him. When we met I was fit and joined him in all these with him. He is a good man and accepts that I need his help but I fear this may be a bridge too far.
I would be glad of some input from any of you who have had to make a similar decision.
I hope everyone of you has a calm and pain-free day.
Written by
annacruachan
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My situation is not quite the same as yours as my OH doesn't have a first wife that was in a wheelchair (the wife yes, wheelchair no!).
However, like you I've reached that point where I have to make the decision. For me it's a no brainer. I'm 95% housebound and can only get out and about with the help of my OH. He drives me everywhere I go and when out I have to use a stick. I have been getting out less and less.
So recently I applied for PIP and to make the assessment we had to borrow a wheelchair from the Red Cross. It was a transit one which OH had to push. He managed it on the day which was good for me but we have quickly realised that a pushed wheelchair is hardly any better because it still means OH has to be with me when I go out and that's difficult for him as he has many health issues himself including getting a new knee in a few months time. I also don't have the strength to self propel so that's not an option.
Luckily for me I got enhanced PIP on both elements which means we can get a car on mobility that can have a hoist fitted for lifting either a scooter or a powered wheelchair into it. Does mean we will have to buy the scooter or wheelchair, probably second hand, but c'est la vie.
But I now look at it in a positive way. It's not me giving in. Instead it's me getting some degree of independence back. It means I may be able to go on small local trips to local shops or just out for some fresh air by myself. And if we want to we can go out in the car and not worry about how far I may have to walk or my OH having to push me.
Yes I'm like you. I don't want to give in so I will still walk as much as I'm able and be as active as I possibly can. Use it or lose it is my opinion. But I will have the option to do more and be as independent as possible. So for me it's a good thing.
Hope you are able to think of it in the same way too.
Thanks Hidden , but you are right. It does take some getting used to. I have had to get really bad (for me) before I "saw the light" so to speak. But then hard as it is to do I am and always have been a believer in the power of positivity (even if I do struggle with it these days ).xx
Thank you for replying so quickly. My problems are the same as yours plus a wonky heart valve, and old age certainly plays its part! I am trying to plan ahead for the time when the decision has to be made, but I also have to consider the effect on my husband. My life being diminished also diminishes his. It's a hard decision to make. I am accepting whatever lies ahead; it is much more difficult for him. Of course his problem with accepting this means that my mental state is not good either. I am in such a quandary.
I can understand that. And for me that's part of why I'm looking at it positively because I am so worried about the extra stresses and strains on my husband's already difficult life.
We thought given his many health issues it would be me looking after him in our old age. But that's not the way it has turned out (and neither of us are at retirement age yet!). He, at the minute, is still more mobile than me (not that he is exactly fit and agile!). Consequently he is currently my carer. But I can see it is making his physical and mental health worse so it worries me. My thinking is that hopefully me being even slightly more independent will take some of the strain off him. Fingers crossed it works out that way.xxx
ukmsmi4 Thank you. Your solution sounds almost perfect. Can I at 77 get PIP. My husband is in fact my carer but would not qualify as he goes away sailing several times in the summer. We stock up on everything before he leaves and I have help from friends and neighbours.
Isn't it also the case that you have to have difficulty washing and dressing yourself?
I don't think you can get pip after age 65 but at the moment you could apply for attendance allowance which is for anyone who needs help to keep safe or washing, dressing and I think cooking preparing a meal, that is until the government decide to stop it which I believe they are considering. You can check it out through age uk who are good or Benefits and work are another good site to get info about this sort of thing, although you have to join them for a small fee for more in depth info. When your Husband goes away and you have to have help from friends and neighbours you need to put this in your application form as this shows you need help all the time.
I not of retirement age yet but am in a similar situation with the mobility issues and the question of wheelchair or not? I am trying to stay on my feet as long as I can but it is getting more and more difficult and painful. I hardly go out now unless to an appointment and I never go alone. I have had a few falls even with my hubby with me but I am a larger bod so he wouldn't be able to lift me and he now has health issues of his own. Its hard isn't it? I do all my shopping online / delivered because I can no longer walk around the shops without stopping every 2 minutes to sit down.
A friend came to visit this afternoon. She has had to apply for attendance allowance for both her parents within the last 3 years and was able to give me some hints on the best way to approach the very detailed forms. All this advice is making me more confident of getting the result I need.
As hebden says will not be entitled to PIP and be careful if you go for Careers Allowance as it is means tested AA would be the best option but get help completing form its a long one .
Sorry I have only just seen your question about PIP. I've been working on some preparation for my pain management clinic appointment on Friday most of the afternoon.
I can see hebden has answered your question for you and given you some good advice. I joined the Benefits and Work group (I think it was about £18) and it was useful. I haven't tried CAB but have heard good reports about them.
If you haven't already done so you could maybe contact your local council's social care department and see if they can help at all. I've found this link on the nhs website that might be of some help. nhs.uk/conditions/social-ca....
Or if you use Facebook you could join the ME & Chronic Illness Benefits Advice Group and ask for advice on there. It's easy enough to do (it must be because I'm on there!). Just click on join and within a few hours or so you should receive an email from someone accepting you in the group and you can then start posting. They do have people on there that talk about many different chronic illnesses including Fibro, it's more about the benefits side of things. facebook.com/groups/2782601...
I was lucky enough to get help with it all from a charity that has recently started working with our local GP surgery, providing advice on social care and care in the community so the doctors can concentrate on the medical stuff. It's been really helpful so you could maybe speak to your GP and see if they do something like that.
Any way, glad you have a friend who can help you with the process. Good luck with it, I hope you find something in there to help you.
Thank you Margaret, those are useful links. So much good advice and all of you so caring.
Sleep well tonight,
Anna xxx
Not sure how old you are anna.. to be considering a wheelchair!! a self propelled chair will only make your arms, neck and back ache!! A lot of rest and then pacing mite just get you back on track.. Hubby will have to accept this is YOU and not "X" he does need to move on and help you now.. Maybe ask him to take you to a local pool that has Jacuzzi-he swim you go for a soak in the bubbles? Ask your g.p about a specialist physio who could take you for hydrotherapy, its amazing how water seems to relax muscles and bones and allow you to stretch and gently exercise Remember wedding vows are in sickness and in health!! Things to avoid until you feel stronger:- shopping- buy home delivered on line, use a moving stairway or lift, avoid heavy gardening just pottering, keep sleep to night time so as not to deprive yourself at night especially if you are still working, ask hubby to push the hoover around until you feel stronger, not just you who has laundry, housework needs, changing beds.. Sharing these chores will help you.. Talk things over with Hubby and tell him your worst fears..Good Luck and keep intouch with us.
I am 77 - 78 in November - and desperate enough to consider anything at the moment. I know pushing the wheels will create more problems so it's not really an answer.
I love the idea of a Jacuzzi but will have to find out if the leisure centre has one; I shall also ask my GP about hydrotherapy. There is the possibility of barometric therapy nearby. People with MS use it. I don't know if it would be helpful for FM, do you?
My OH is actually very good at helping with the day to day household chores and even with the garden though he does not enjoy gardening. I hope I have not given the impression that he leaves it all to me. We changed the bed together 2 hours ago! I also have a couple who come in to do my cleaning once a week, courtesy of my younger daughter, bless her.
Hi, I'm don't use a wheel chair and I'm thankful I haven't had to make that decision. I think your health is most important not his enjoyment!! My vows said 'For better, For worse'.... so if his activities are that important I would tell him to fly SOLO!! I'm not being mean just think your health should be #1 in this issue.Also she is EX- wife, right? ?Good luck.Peck 🐤
Hi honey, know exactly where your coming from as I'm same but haven't got a husband & rely on my daughter for a lot & she had hands full bringing up 3 kids, running a house & a business. I hire a mobility scooter whenever I go anywhere that involves walking any distance & it's really cheap. £5 a day where I go, you have to deposit £50 but get that back.
I've been hiring them for about 2 yrs now. Where I live they have another scheme for disibility in a lot of Country parks. You pay £10 a yr and you can hire a rough terrain mobility scooter for about £2, you have to have 20 min tuition cos you don't want to go in the lake lol..but I thought it was brilliant idea.
I really do want to get 1 but it's affording 1, like you say they are not cheap. You can get quite good 2nd hand & reconditioned ones. I will get one eventually.
Hi Janet- Nurse Gladys-- I,ve always felt a wheel chair or mobility scooter a last resort really although there are days when I want to go out and just cannot get dressed let alone go for a bus! I,ve been looking into getting a car-so much per month and just add fuel, there are a few which would suit me being able to get in and out of them and pump up seats and adjustable steering, my biggest worry; like many; is committing to this and then finding PIP or ESA stops and I cannot pay for it each month, I didn,t qualify for mobility I considered myself lucky to get any, maybe I,ll try next time its due for renewal.
A very interesting post, I too find I don't regain the mobility I had before a flare. I do gentle yoga and tai chi to keep as mobile as possible, I rely on crutches to walk, my next step will be a tri walker I think it will offer more support and you can get one with a seat xx
Hallo Lou, thanks for your post. The yoga and tai chi I shall take up again when I can walk without pain.
Before my recent flare up I was using a rollater type walker with a seat and a basket - wonderful for the back, hips and legs, but oh, my arms later on that day!
I do as many small exercises as I can manage sitting and lying down and I'm pacing properly at last! xx
Hi
I wouldn't rush into buying one yet.
At the end of last year and up until about March this year I found it nearly impossible to walk and to stand. I too looked into wheelchairs. I decided to rest more and look after myself more.
Then I found that it eased off a bit and now I can walk a bit more. Maybe if you were to keep doing what your doing now and pace yourself and have more rests, this might work for you too.
You're quite right, I am rushing this; I'm impatient and I'm scared. After nearly 3 weeks I am only free from pain when I am sitting or lying down and for about 4 minutes after moving to the vertical. Even sitting and in bed my arms give me gyp.
Sorry for the moaning, though it's good to be able to moan and be understood. My OH, like all men, thinks he has to do something immediately to put it right. Mars and Venus!
I am so genuinely sorry to read of how you are suffering and struggling and I want to sincerely wish you all the best of luck. It is a big decision as you knwo, but if you are not in a rush then just see how you go? Please take care of yourself.
If you are thinking of a wheelchair, get your GP to refer you to Physio or Occupational Therapists for assessment. they can provide them though the Medical Loan scheme. It is how I got handrails, toilet frames, walker and wheelchair, although I waited several months for the wheelchair! There is absolutely no need to buy a basic one yourself.
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I also have a couple who come in to do my cleaning once a week, courtesy of my younger daughter, bless her.
New Car put a smile on my face !!!!! :-)
new to this site, but not new to fibro! 
Just had a second opinion from a new rheumatologist which had not worked well. 
Today, after a few good days [what a blessing] I saw my new dentist Ow
