Does anyone here use a wheelchair?

To answer your question - I was in a wheelchair on and off for a couple years, with a good chunk of time depending on it whenever I left the house. I have five homeschooled children, two with Aspergers, and it took some time for me to get used to asking them for help and counting on them to do more around the house....and to realize what I could do and all I could still contribute despite my physical limitations.

Your multiple diagnoses - are these all from one doctor? The meds you are on - are the prescribed by one doctor or multiple? The combo of drugs seems dangerous to me, and could potentially be doing more harm than good. If you health isn't improving, mtx alone isn't doing it for you and it seems you need to find a doctor who will augment that with another drug or try you on a biologic.

Hey everyone,thank you for your replies! I don’t think im giving up by having a wheel chair,I think im being practical! But I’ll have to convince my doctors. I don’t think its fair that they think its ok for me to continue like this. This flare has lasted 11 months and doesn’t look like its going to get better,the pain I cause myself because I want to go to the park with the kids or go to parents night or simply go to the shops with them is awful. I’m at the point now that even my kids are trying to get me to stay at home and let daddy take them or they try to cut their day out short because they can see how much pain im in. Its not good when your 5 years old son tells his 6 year old brother off for walking to fast cause mummys sore!

There just seems to be such a brick wall over here in the UK when it comes to doctors giving out wheelchairs. When my youngest son needed one we had to fight for months before he was given a mobility aid and even at that it was a major buggy and we had to buy his wheelchair! He’s 5 now and still needs his buggy for days out beacuse of breathing,muscle and fatigue problems. He has out grown his wheelchair and they won’t help us get a new one! So im not very optimistic about getting one myself. I had thought about buying one for myself but again its very frowned upon here! But im gonna have to do something as im going out of my mind stuck in the house! My husband is an Amazing guy but he’s not keen on the idea of a wheelchair either but I think im gonna push the issue with my GP this week.

Emmy- while a wheelchair may be practical for the moment,your treatment is not! If you were being properly treated, any discussion of a wheelchair would have no relevance to you, other than as it concerns your son.
Do you have films that show progress of the disease?

My diagnosis of fibromyalgia and M.E came first from my reumy theme a year later the PsA started and again this was diagnosed by my reumy. I see my GP on fortnightly basis and my reumy monthly. I have told them im concerned about the drug combination. I have asked several time for my pain management to be changed but im told there is not really any other options? The MXT was started back in July of this year and im still not responding to it again I asked last week to be changed onto something else but was told I have to fail this trial first before I can try something else,this trail will end in 4 months. My GP and reumy has been treating my conditions from day one and have seen me gradually go from muscle pain and fatigue to “walking” with 2 crutches both knees in braces both wrist in braces and in complete agony! I’m at a loss with them and feel like im banging my head against a brick wall.

There have been a couple of comments regarding my medication combination being dangerous? That’s really frightening could someone please explain why this dangerous?

I’m in the UK and getting a second opinion is not easy!

I’m still learning how to use this website and im trying to do so on a windows phone so i might be a bit delayed getting back to people via pm!

Also I have been on steroids nearly a year now? Is this also unusual? I’m getting quiet worried now?

I am a mom of 5 and use a chair, 2 years ago I had a hard time accepting it at first but being able to move and not be in agony was pure bliss. I was given a normal but light weight fold up push yourself chair at first because most of the damage was in my lower half, but only weeks later my hands started to deform I have the rarest form (Mutilans) and its changed my hands shape and function a lot, anyway they added an attachable motor that can be popped off pretty easy and underneath a bag that holds the battery also easy to remove, remote joystick controls panel that also can be taken off when you need to fold the chair up and pack it in the car which meant more mobility with less effort where i could endure longer outings that last all day for a mom with 3 teens and 2 munchkins under 5 its been a life saver. The fold up motor one will be my indoor and house chair only soon though because last month I was approved for a chair built for permanent use and 2 weeks ago they sent out a team to weigh and measure me, and see what features I would need like leg rests that can be raised and lowered, they also measured the doors in the house and so on to make sure I will still have access to each room, though the new chair will be far to heavy to lift and doesn't fold up, the motor lasts all day and into the night before needing charged, wheels are small and wide much better for outdoor use and its faster for driving in the street when needed, its got all kinds of neat features like being able to recline and the control panel is built into the chair directly but thankfully can still be taken off to switch which side of the chair it is on which helps a ton when one hand is in more pain than the other, because this chair can not be lifted we have had to add a ramp and lift to our van but thankfully in Germany all of these things are fully covered when your on disability. Not everyone returns from being chair bound, and not everyone has found a med combo that works for them, I am allergic to 2 of the biologics and the other 2 I was on had absolutely no affect, I am stuck with long term cortisone use and have not have even a pause in the last 3 years because my PsA is in a constant flare state though we do adjust the dose according to pain and disease activity good weeks I wean down to only 5mg at the worst of times though we go up to 50mg the frustrating part is that it takes several weeks to wean it back down. I can no longer take MTX because of damage to my liver and kidneys which was caused by both mismanagement of medications a mistake made by a doctor who misdiagnosed my condition at the start, but the meds did not act alone in the damage however because I also have Lupus. The combination of the 2 is also the reason for the non stop flares they illnesses play off of each other, when my Lupus flares liver levels rise and meds for PsA have to be stopped to prevent damage, by the time we it under control the lack of meds for the Psa has triggered a flare with it. Having 2 autoimmune diseases is miserable its like a tag team of suck, especially with a lack of meds that actually work for me, but through it all I am a happy go lucky person most days albeit in constant pain but seriously if I had to feel emotionally as bad as I do physically I would die so I take each day with as much humor as I can muster, and fight hard for as much normalcy in my life as possible. My husband is a champion when it comes to taking over when I hit my worst lows, thankfully the company he works for has been amazing and allowed him to switch to working from home 2 years ago so he could be here as my and the children's care takers whenever we need him. He of course had to learn be a stay at home dad cooking and cleaning and all the things he never really had time to be because of working and being in college and so on and I have to say 5 years ago when I was spending weeks at a time sometimes 8 times in a year in the hospital he was in those learning phases it was rough I had to learn to let go of the control and let him do things his way and even ruin dinner a few (hundred) times before he got the hang of things, but now him being home is the biggest blessing we could have asked for after 15 years of marriage (come Jan) and being together 20 years he knows me best. The insurance granted to pay for home care help last month but the thought of a stranger coming in to take over had me a bit panicked so super hubby went and took some courses they offered so he could be the official paid caretaker, he has to take a course now every 3 months but after 2 years of living with a pay cut because he has switched to working at home so he could care for me we finally have a break because the insurance is paying him for my care. I am telling you some of these things that seem off topic in short which is actually long cause I am a very wordy person because this disease will take you down many roads and can be hard of your entire family, always keep them up to date, do only what works best for you and your family and your situation at the time, never try to keep up with the joneses. Be flexible and go with the flow even if the flow means a day or a week in bed, give yourself a break, cut yourself some slack, find humor in the craziness that is now your life and learn new ways to get old tasks done in order to spare yourself pain energy loss and guilt. But to that same extent also never force yourself to take medications or a treatment that does not work best for you, if you really wanted to you could actually refuse to treat your disease with any medications and only work with homopathic type of remedies or heck you could decide that you wanted no meds at all and only heat or light or whatever and doctors could not refuse to still give you care and in fact they would have to find options that work for your treatment preference, they could decided not to be your doctor at all however because many are lazy and don't want to have to learn new ways to treat patients, some have a take the meds for the disease and if they don't work it must be your fault type of complex, and some even use a standard cookie cutter type of care for everyone. This illness is complex one treatment does not fit all and none of this is your fault and you have a right to control your care having a doctor not willing or able to work with you is hell so if they don't agree to your terms and listen to your complaints, show compassion and offer options that work best for you then you are indeed better off without them as you doctor. You need to make sure they know that this is your life, your illness, you are the one in pain and struggling with the limitations, and your family being affected, you have a right to say no or yes to treatment options and any doctor who is not willing to work with you to give you the best care possible is not a doctor you want to have,though I personally suggest though you don't give up and just accept the pain, try new medications, physical therapy, look for home remedies like heating pads if your pain responds well to warmth or cool packs if it responds better to cold, get active in your care both at the doctors and at home, change things that become hard to use or do like remove door knobs or sink and tub knobs you have to turn for handles you can push down, replace cooking utensils with ones with wider grips if your hand a lot of issues with your hands or use a wheeled cart for moving laundry rather than a basket you have to carry, little changes like that can save a lot of pain and energy. Above all stand up for yourself and take control of your care this is your life and you and your family are the ones who will suffer if you do not take the reins and put your foot down when needed. Personally had I had the strength to stand up for myself I would not have been misdiagnosed for so long and left with the wrong care which lead to the extreme damage I am now living with. You should not have to suffer because a doctor is out of ideas, or so overbooked with patients they do not have or take the time to listen, or has some sort of weird complex that makes you feel pressured into accepting treatments you do not want or that do not work, but never be afraid to give something new a try from medications to pain therapy and remember that physical therapy or exercise may seem a grueling or daunting thing when you are in pain but I know first hand it can be one of your best friends when it comes to keeping mobile and active and often times it helps to prevent a lot of pain in the long run. Your life and quality of living depends on you taking care of yourself and the best way to do that is to be your own advocate, stand up for yourself, and be the one to lead your care because when it comes down to it you are paying doctors for a service,and just as you would not pay someone for taking care of your lawn if they left it overgrown and out of control, you should not be paying for a doctor who allows you to be left in pain and your disease out of control because the damages that can happen in a state like that will become permanent without proper care and treatment.

sorry again for my wordyness its a flaw I have really tried to work on but in a foreign country where for the first 3 years I did not speak the language and being far away from friends and family not to mention stuck 24/7 at home with only hubby and 5 kids, there is no cure for it lol I need to take to people and in English! while I am not fluent in German as well english is a comfort type of thing for me.

I added in a link to a blog post I wrote on here back in 2011 about getting my first wheelchair in case you want to read it ... I promise it is shorter than this response >.<

http://discussion.livingwithpsoriaticarthritis.org/profiles/blogs/goodbye-rapunzel