The new Rheumatologist was utterly unhelpful - ignored previous test results confirming Small Fibre Neuropathy, asked questions then wouldn't let me answer them, abused me for taking too many medications for the pain SFN was causing, then having ignored the abnormal SFN test results said that there was no evidence at all that there was anything actually wrong with me and therefore I should stop the treatment I was already on as she doubted it was doing anything for me anyway. She left me feeling like I had been treated as though she thought I was making everything up to get access to pain medication.
My existing Rheumy was appalled.
That leaves me with no treatment to slow/stabilise the rate of nerve damage...and my understanding is that any nerve damage that is more than about 2 months old is permanent. The wait for that appointment with its completely unhelpful outcome used up my 2 months grace that might have saved my ability to walk without needing crutches. So now I find myself having to accept that the state I am in now will be the best I can hope for going forward.
Pain-wise, the addition of the Mexiletine by my Pain Specialist has helped a little - enough that I have not had a repeat of the day I got to work and then couldn't walk. I have had to find buses that help me limit the amount of walking needed to get to work. Over the course of the week, some of the pain from the previous day affects the next day, so that by the end of the week I am really struggling. I have had one week where I couldn't face the pain on the last day of the week, so offered to work from home instead. Last week I came to terms with the fact that I will need a wheelchair soon...and decided that I could put it off until I was struggling to face the end of the week more regularly.
Yesterday I asked myself an important question: WHY put it off?
I'm not doing enough walking anymore to count as exercise. Even when I do get one, I will still be using the crutches inside. I am already looking into hydrotherapy to try to keep up physical condition. The only thing using crutches to get to/from work is getting me is significantly increased pain levels.
Why should I continue to do that to myself until the pain becomes completely unbearable? No-one is going to give me a gold star for continuing to push through it. No-one is going to say "you've suffered enough now, you have earned the right to use a wheelchair". I am at the end of the line when it comes to pain medication - if the Mexiletine isn't enough the next thing to look at would be a spinal stimulator - and I don't think given the extent of the neuropathy that this is likely to work so I am reluctant to go there.
It'll take some time to organise one anyway - waiting until I cannot manage at all anymore is probably very stupid given that. We will need to organise ramps for the front steps to get it inside overnight. We'll need to find one that is portable - it needs to fit in the boot of the station wagon, and to be able to be loaded into the car without C or I having to lift it ourselves. That means also trying to find a ramp or a wheelchair crane/lift device for the car. It needs to be highly manoeuvrable - my home and my workplace are not really set up for wheelchair access. That also means that it needs to be able to fit through normal sized doors easily. It needs to have good stability for outdoor use, as that will be the primary purpose for the chair. It needs to have elevated leg rests to reduce pressure on the sole of the foot - and those will likely need sheepskin liners to reduce pressure on the calves of the legs. The need for those leg rests is why I need a chair and not a scooter. It needs to be comfortable for me to sit in for long periods of time - and given the problems I have finding seating that doesn't hurt my back/shoulders/coccyx that may be difficult to find. It also needs to have crutch holders to carry my crutches in so I can use them around the office. At home we will need to pull the front lounge room apart and throw some stuff out to make room to park/charge it overnight.
So rather than putting the decision off, I think that it is time to get started with it now. I am not sure whether I need to (or should) go through an occupational therapist to make sure that I am getting the right things to suit me properly. There is a major showroom at the Independent Living Centre that is probably the best start point for trying chairs out, but they are only open during business hours Mon-Fri. I have the morning and early afternoon available on Tuesday next week, so I will try to make it there to look at what is available next week. I would prefer to do so with my husband so we could discuss pros/cons, but business hours access means that they are only open when he has to work.