Views on using mobility aids for fibromyalgia and or CFS ir other chronic pain conditions

Waylay

@marmalade
"I think it is very difficult for people who have previously been very active and very driven to accept the need for aids."

Thank you for putting this into words.

jeanypee3

I have constant pain and fatigue from my Fibromyalgia and arthritis so I don’t go out much now.
when I do go out I use a stick , if it’s just from the car to a nearby place where I’m sitting for a meal etc. This is also to let people know that I’m struggling and then they are more understanding.when I go shopping, about once a fortnight now, I use a mobility scooter. The scooter has been amazing as I couldn’t go shopping otherwise .
i don’t notice people staring anymore as I know that I need the aids even though I can walk, my legs work fine , I can walk around my house and garden , I just can’t walk far enough to go out anywhere without aids . 
I too was a teacher in my old life, 
ive joined this site today to make new contacts .
Jean 

marmalade

Hi @jeanypee3
I am exactly the same as you but use a power chair as opposed to a scooter.  It allows me to have some semblance of a life.  This is a great site I am sure you will enjoy it 

sunflower

Hi @jeanypee3
This site is great. People just 'get it' without you having to go into lengthy descriptions.
I am similar, M.E. with lots of pain, plus chronic migraine. Makes going out tricky. 
I am ok having hand grabs in my shower and bath, because no one sees it and I can tell it makes such a difference.
I have a course with the ME/cfs service here. First of a 2 part session. Dont hold out much hope as I know the service is v underfunded, but hoping there may be some OT input. I dont know whats really available for people like me. 

marmalade

Hi @Waylay
Thank you.  It's a shame most of us have to deal with that.  I guess it's part of coming to terms with being less able than previously.  I know in my head I can still do things and still want to do things but my body betrays me.  It's difficult. 

marmalade

Hi @sunflower
Not sure where you are based but certainly in Scotland I can ask for a referral to IT and physiotherapy.  The NHS has a rehabilitation service.  Ask your GP if you can be referred.  My OT supplied me with kitchen aids, bath aids and a perching stool.  They could be really helpful for you.

sunflower

@marmalade I am based in the Midlands. I will go and ask for a referral to OT.
Thank you!

marmalade

@sunflower yeah its worth checking out.  Good luck let me know how you go.

DavidJohn1984

@sunflower

I’m in the Midlands, you can ask for an OT to come out and assess you without going through the Doctors.

I went through the councils adaption team and they got a lovely young lady to come out and assess me.

hope this helps.

sunflower

@DavidJohn1984 that's really good to know, thank you, I'll look them up

Tilly57

DavidJohn1984 said:

@sunflower

I’m in the Midlands, you can ask for an OT to come out and assess you without going through the Doctors.

I went through the councils adaption team and they got a lovely young lady to come out and assess me.

hope this helps.

That's what I did too??

ncps

have you guys looked into support groups in your area? I run them all over Northamptonshire for people with chronic pain and they make a massive difference to your life. just the fact you can speak in person to someone else who ha similar struggles helps.. I cant put into words how powerful this is. Any of you are welcome at my meetings but as I say they are only in Northants but you may have some locally?.. Oh just one thing to watch out for though, I always keep my meetings informative and positive

marmalade

@ncps
Thanks for that.  I have tried these in the past.  I found them to be too focused on the condition and what I can't do rather than on the positive.  I like that you seem to be aware of that and make the effort so that it is not like that.  Unfortunately I am not near you.

ncps

@marmalade That is exactly what we don't need!!  We all know we are in pain but by concentrating on the positive it helps

debbiedo49

I have fibromyalgia and I suffer from fatigue after going to work which lasts in total house to house 2 hours. Mostly I am sitting or getting up and down. I was getting used to managing the time but struggling to get home and just collapsing every day. To me this issue was made manageable by the placement of public outdoor seating on the walkways to and from my job. I could pace myself and rest on the seats if I needed to. However before the summer the council removed all of the seats on this route apparently due to “vandalism.” In my opinion the seats were find to use. So I waited for replacements over the summer and the council did not replace them. In one part , the park, the put a couple of wooden picnic benches. This covers very little of the area and they are in the grass so if it’s muddy i can’t use them anyway. It goes no way to provide rest stops for me. So I contacted the council to make a complaint and I advised them that people like myself with a disability need those seats, as well as others like the elderly, families etc. I asked were they going to replace the seating? I got a reply eventually from someone stating that they would take a look. That was a few weeks ago.  
I have never been advised about any aids for fibromyalgia and I think it’s a case of you don’t ask you don’t get. There are lots of things I can’t do at home because of my hands and wrists but I ask my son to help me. There have been times when I’ve had minor accidents due to fibromyalgia and weaknesses and I’ve been worried about what happens in the future and what should I be doing to help myself. Like recently I fell down stairs at work and in hindsight I should have been using the lift. But I just tell myself it will be okay. It takes something to happen for me to stop and think what should I have done? 
There have been times where I would have appreciated a walking aid like a stick but I just push on and try to manage. I was trying to explain this to my therapist about how restricting my life has become because of fibromyalgia and my mental health issues ( which to me are related) but she didn’t really get it. 
Also, does anyone use aids for fibro fog and memory issues? Like taking meds, remembering appointments and important stuff, etc? I rely on apps on my phone for that kind of stuff but still miss a lot. 
Great topic! 
Thanks x

marmalade

Hi @debbiedo49 I totally relate to trying to find ways of managing your condition.  In terms of physical aids I use special forearm crutches as normal elbow crutches are not suitable as they create more pain.  I also use a power chair when I am particularly fatigued or in pain.  I have CFS  too.  But for me the chair allows me to conserve my energy and ease the pain and allows me to do more in a day than I otherwise would be able to achieve.  I use phone apps for medication and appointments.  I pay all my bills by direct debit so I don't forget any.  I also use other aids for communication such as dragon which allows me to speak to my computer and it will type for me.  I then use read and write gold to help with reading my material back to me and checking grammar etc.  I use the echo pen to record meetings and lectures too as I struggle to retain information from my lectures.  Hope that helps. Do you have to walk a lot to get to work?

Chloe_Alumni

Thank you both for sharing your experiences.

Aids can be a great way to support yourself. For medication I also use apps @debbiedo49, I also have dosette boxes which I've found really helpful.  

debbiedo49

Thanks @Chloe_Scope I may get a box as I was looking at them online and saw them with push release buttons as I struggle with fiddly openers. Thanks @marmalade it sounds like you have done a lot of research! I will be looking those items up for reference. My managing my walk to work was originally part of a planned return to employment after several years fighting chronic pain, fibro and m h issues including agoraphobia. Being able to time and be in control of walking to and from work approx 15 minutes to 30 mins each way is manageable for me most of the time 5 days per week as long as the conditions don't change. Like the fibro and the planned route and the rest stops. Things like the pathways as its green space being flooded regularly due to weather can really throw me off and I would rather get wet feet than try walking in wet grass lol. I'm currently looking at wellies which I never thought I would wear again. It's not just me. Meeting others on my walk and chatting I've realised that people need decent safe pathways and seating to rest on. To go to the effort of waiting on a bus and relying on someone else to accompany me which is also the long way around just isn't practical. Also I practice mindfulness on my walks and enjoy taking the odd photo on my ? 

marmalade

I understand the mindfulness aspect.  I live in the country side and it really matters as I think this condition can really affect your mental health if not kept balanced.  I really hope you get the issue of seating resolved and in the meantime when you get your wellies....jump in a few puddles ?

Chloe_Alumni

That sounds really peaceful if the weather is right @debbiedo49! I nearly bought wellies when we had flooding in my town, not that I can walk in them very well. 
I hope your walks keep bringing you comfort and there are plenty of places to rest.