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I think I may need help with mobility?
mousey
Member Posts: 16 Courageous
Hi all 
I'll try to keep this relevant to the topic. I have a lot of backstory though but I'll keep it shortish.
While I have had problems with my joints for a good while now (hypermobility syndrome), my fatigue levels are just getting worse and worse which is impacting hugely on my already limited walking ability.
I had 2 major operations (in one) 6 months ago. Before the operation, my mobility and fatigue wasn't great. I still managed to get to the shop down the road here and there, I had to take it easy later on and some of the following day due to being 'wiped out', but it wasn't too bad compared to this. Certainly not normal though.
Now every day is a challenge. It's a combination of joint pain when walking, fatigue through the roof (the kind sleeping doesn't help), my heart rate shoots up when it wasn't so bad before (due to being on beta blockers for unexplained persistent tachycardia which I am still on and will be for the rest of my life I believe), dizziness, and getting out of breath very easily. I keep having to stop when walking to take the weight off my lower joints, catch my breath, or from dizziness. I have to walk so so slowly. People walking at normal speed breeze past me and it's embarrassing when I have to cross the road as cars speed off or honk at me for being slow and although I have to speed up to cross I have to stop on the other side because of the above.
I've gotten even worse at the basics in part due to the fatigue. Things like tidying, washing up dishes, my clothes are in mountains or just on the floor absolutely all over my home. It's stressful and embarrassing. But I can't do anything about it on my own.
I have a lot more going on than this but I'll save that for another time.
I don't really know where to turn. Evidently something isn't right. I used to use a crutch or a stick on really painful joint days but I've become so embarrassed after people made comments at me that I go without now.
I don't know what to do. I am incredibly frustrated and angry at my body and I feel like rubbish for not being able to do something so easy for others.
I'll try to keep this relevant to the topic. I have a lot of backstory though but I'll keep it shortish.While I have had problems with my joints for a good while now (hypermobility syndrome), my fatigue levels are just getting worse and worse which is impacting hugely on my already limited walking ability.
I had 2 major operations (in one) 6 months ago. Before the operation, my mobility and fatigue wasn't great. I still managed to get to the shop down the road here and there, I had to take it easy later on and some of the following day due to being 'wiped out', but it wasn't too bad compared to this. Certainly not normal though.
Now every day is a challenge. It's a combination of joint pain when walking, fatigue through the roof (the kind sleeping doesn't help), my heart rate shoots up when it wasn't so bad before (due to being on beta blockers for unexplained persistent tachycardia which I am still on and will be for the rest of my life I believe), dizziness, and getting out of breath very easily. I keep having to stop when walking to take the weight off my lower joints, catch my breath, or from dizziness. I have to walk so so slowly. People walking at normal speed breeze past me and it's embarrassing when I have to cross the road as cars speed off or honk at me for being slow and although I have to speed up to cross I have to stop on the other side because of the above.
I've gotten even worse at the basics in part due to the fatigue. Things like tidying, washing up dishes, my clothes are in mountains or just on the floor absolutely all over my home. It's stressful and embarrassing. But I can't do anything about it on my own.
I have a lot more going on than this but I'll save that for another time.
I don't really know where to turn. Evidently something isn't right. I used to use a crutch or a stick on really painful joint days but I've become so embarrassed after people made comments at me that I go without now.
I don't know what to do. I am incredibly frustrated and angry at my body and I feel like rubbish for not being able to do something so easy for others.
Replies
And hi
I understand the anxiety that might lead to changing your lifestyle in the face of other people's intolerance and stupidity, but if you're having a hard time without your aids, it's really important that you don't go without. It's easier said than done, I know!
It also sounds like you could really do with a needs assessment from an occupational therapist. It might be worth having a chat with your GP about a referral if you can.
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Those ignorant people who have made negative remarks and made you feel bad, have no idea what a single minute of your life is like, let alone a day!
I was only 45 when I began with mobility problems and I was active, well and it came as a huge shock. I`m, 67 now and still have no diagnosis....despite seeing 16 neurologists., being a full time wheelchair user and needing to be hoisted for all transfers.
All these things make me feel frustrated and helpless.
As you are struggling so much at home, why not think about asking for a care assessment? You might be able to get some help. Ask Social Services about this. xx
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What do you need help with? I recommend making a list prior to the assessment. Some examples of things care companies can help with:
Cleaning
Cooking
Tidying
Gardening
Finding work
Learning new skills
Keeping fit and active
There is nothing wrong with asking for help, but I appreciate it can take some getting used to. If we can do anything to help then please do let us know.
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I have no idea what to expect. I told her the things I struggle with (that were off the top of my head) but I honestly find it hard to think and remember stuff, especially on the spot. Does anyone have experience or advice about needs assessments?
Thanks for the replies everyone.
You are actually able to refer yourself for a needs assessment on the government website. This is what they say they can offer:
Here is the website if you are interested at looking into it more: https://www.gov.uk/apply-needs-assessment-social-services
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In the end I did refer myself for a needs assessment. The doctors surgery still hasn't done it as far as I have heard... When they do it I'm sure it can be used to back up my referral, at least that would make sense.
It seems like there is a very long list and I am now on it, I'm expecting a few months until someone actually comes to do the assessment.
I'm getting incredibly frustrated by my lack of mobility and I'm under a lot of stress from other sources too. I hope I can get some help soon.
Occupational therapy assessment should be first on the list and self refer even if your GP says they will do it. My GP referred e 3 or 4 times over 12 months and got it wrong every time, referring me for treatment instead. You may also have to contact a different department for any aids required which is done by a separate assessment and is not always done by OT departments as standard, it depends on how your council sets it up. If you self refer they will contact your doctor anyway.
Try to get your GP to refer you to the Pain Clinic. They can supply appropriate sticks and help you set them at the right length as well as giving out and teaching the use of coping strategies. Personally I prefer Fischer sticks as the weight transfer is through the heel and flat palm of the hand instead of it all being on a curved palm. I also use finger less gloves when I go out (bicycle gloves are quite good for this) for use with both my sticks and with my manual wheelchair to avoid both blisters and any build up of hard skin.
Pester your GP for any treatment / medication you can. They are often loath to do more than hand out Paracetamol and Ibruprofen which are at the very weak end of the pain killer tree. Other meds can also help with the depression that so many sufferers have to deal with.
Never ever let other people's opinion and / or ridicule stop you from using whatever aids you need to. Initially try to ignore such stupidity and once confident with that maybe have a go in return showing them up in public, guaranteed to shut most people up forever.
If things continue to deteriorate or even if you think it might be helpful, get someone to take you to somewhere local to look into either wheelchair or electric scooter use and don't put it off because you are worried what other people might say. Even if you only use them very occasionally it is better to have and not need than need and not have. Most towns should have 2 or 3 places to go to and even some larger villages may also. These places will always be helpful and most of them will have many simple aids for washing, picking things up, opening cans and such like. In my town there used to be a place to hire a wheelchair for a couple of months at quite cheap rates if you just want to experiment. Try looking for local places on the internet, almost all such aid shops / places will advertise there.
Personally I have had to downgrade to 1 stick from 2 due to some problems using 2 cost me but although my problems are completely invisible I have used sticks for a decade and have been through the quiet comments behind my back stage. I have also used a wheelchair for almost as long but generally only once or twice a week initially. Now I use a scooter more and do feel a little self conscious at times in busy areas but I also feel much safer than when using a stick although I always have a stick with me should I need to go into somewhere that isn't disabled friendly or where I need to reach up or down for things such as in supermarkets.
Apologies for the italics but I pressed wrong keys and can't figure out how to reset it, lol!
TK
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