I’m very lucky.
Since I got M.E, I’ve never had anyone important disbelieve I’m physically ill. Johan, my old GP, consultant, old psychiatrist, the CFS clinic people, social services, my friends and even the ATOS doctor assessing me for DLA have all accepted that yes, I am as ill as I say I am, it is a physical illness and they try to do what they can to help me to deal with it and improve. From my friends and reading stuff on the internet, this seems to be unusual, and that’s wrong. I’ve even been treated well in two different A+E clinics- the Queen Elizabeth had a doctor troubleshooting what to do about my bad reaction to morphine (abdominal spasms- she gave me buscopam which helped) and the RVI had to pick me off the floor with a hoist but were very nice to me while doing so (in that case I’d just been sat up too long at an outpatient appointment and my body protested by jerking- I was fine to go home after lying down on the floor/trolley for a bit).
I’ve experienced very severe M.E (no voluntary movement, inability to communicate, Johan’s breathing making me feel deathly ill, going in and out of consciousness, being in so much pain I kept passing out) but was lucky that the worst of it only lasted a few days, and overall the relapse only lasted a month or so. Since then I’ve been gradually improving in every area but cognitive and am now roughly back to where I was early October, before the chain of events that caused my massive relapse and made me housebound and then bedbound. That it only took 6 months to get back to being able to go out somewhat reliably is something I’m very grateful for.
When the CFS clinic people (I need to think of a shorter description for them, oh well :P) came out a couple of weeks ago they were great, apart from the appointment giving me payback 😛 They’re fine with me not following any formal treatment plan at the moment (they normally do graded activity therapy, which is customised to the patient) as my listening to my body and slowly pushing it when I feel ready is working, and they accept that. They gave me a couple of suggestions on ways to build up the muscles in my back so I can hopefully support myself when sitting up again, and helped me with my leg problem, and they’ll come back out in May. That they are willing to do home visits and were willing to help me when I was severely affected (when we asked them for the home appointment I was still completely bedbound) is also unusual from what I’ve read. Yes the appointment was exhausting and I got payback, but it was useful and I feel better knowing that if I need to, I can contact them for help.
Apart from currently having no GP (something we’re hoping to fix after the bank holiday- the first GP surgery didn’t want to take me on as I was housebound at that point and although I’m not now I don’t trust them if I were to become so again) I feel pretty well supported. We need to make another appointment with my consultant now that I’m able to travel again, helped by the fact I’m now a lot closer to the hospital. When I see him I want to ask about suggestions on things to help my spasms, especially the ones that last for hours and stop me sleeping. My old GP was a bit uncomfortable prescribing anything for them before I saw the consultant, which is fair enough (he was happy to help with all the other problems I had).
Moving to the new flat has also helped so much. Despite not being able to use the toilet or shower (roll on May when they fix it for us) now I am able to sit in my wheelchair Johan is able to get me outside and down the ramp, despite the front door trying to kill him or me every time (it is heavy, and automatically shuts). If I were still at the old flat, I’d still be housebound because of the stairs. Having the freedom to go out again is making things so worth it for me, especially since I’m not experiencing any major payback up to now. I went to Taybarns in South Shields for Easter dinner last night and managed pretty okay, though we’ve worked out I need a wheelchair cushion. That was half an hour each way, plus an hour there so was out around 2 hours (actually, longer than that as I popped into the local shop on the way back and there was a wait for the Metro- make that 2 1/2 hours). I was okay other than a sore back and bum, which hopefully a cushion will help.
I’m also lucky in that I have reliable public transport. All the buses I use in the area are wheelchair accessible, and if they ever aren’t the bus company will call me a taxi (something that has been offered to use several times before when ramps have been broken, though we’ve declined and waited for the next bus as it was easier for us). I have a free bus pass with companion card that works for all of Tyne and Wear, County Durham and Northumberland (and there are accessible buses to most of those places). The Metro is very accessible so long as the lifts haven’t broken down, and if they have there’s normally an alternative route. It’s not perfect (my wheelchair slides a bit on the bus and Johan has to keep hold of it sometimes) but I’ve never experienced the problems that others have with bus drivers not stopping or being unwilling to put the ramp down or not asking pushchairs to move from the wheelchair space. In fact, it’s often us who say we’ll get the next bus if there’s a lot of prams or similar (despite the driver and passengers being willing), as where I live now there are buses around every 5 minutes and by the time prams are folded and I’m in place the next bus will have arrived, and there’s no point inconveniencing other people if it’s not necessary. Trains are a bit more hit and miss in that I’ve been forgotten when I’ve booked assistance before, but luckily Johan was able to find someone so I didn’t have to be carried off (I’d be unable to crawl).
I’m getting there. Johan was worried about my DLA until I reminded him that I was attending college and doing a lot more for myself back when the ATOS doctor assessed me, so I don’t need to report my improvement until I get better than I was then (which was around May last year). I’d love to be able to reduce my DLA level as being on high care, high mobility is depressing, as it’s hard to accept needing that much help. Until I can manage the nights without needing Johan (though he doesn’t always wake up when called) and can look after myself well enough not to need near 24 hour care and supervision, or I’m able to walk properly again, I’m on the right rates. The money does help a lot- being able to just buy a new wheelchair cushion as I need one now, paying more for takeaways as Johan is struggling enough with caring for me to add cooking on top (note to self: need to book the electrician to fit the cooker), knowing I always have enough money for a taxi if I need to get home urgently when out and about, being able to buy things for the flat which we only need because of my disability, paying towards the respite care where I go into a care home three times a year so Johan can have a break- all stuff that means I (and to some extent Johan) have as decent quality of life as is possible. We’re not rich but we’re not having to worry about money, and that makes things so much easier.
I am still very disabled. I can’t get anywhere by myself, as I can’t walk or self propel my wheelchair. I need a harness to hold me in a seated position in my wheelchair as otherwise I flop forwards. I need Johan to cut my food up for me. I need Johan to wash me and help me dress. I need him to help me with my medication and with my wheat bags to help me manage my pain. I need him to read my letters for me and help me understand things. My speech is unreliable. But I could (and have been) worse. And the fact I’m believed makes everything that much easier. It should be the case for everyone, and it makes me angry that it’s not.