If you see a wheelchair get out of the way instantly. Do not wait to be asked, do not look at it like you have never seen on and always assume the occupant can speak. And instantly means absolutely immediately.
Not that what I has to say meant a thing but it’s nice to be proved right.
In March 2006 I said:
One can only hope that the lying, cheating and greedy Catherine Orridge, Sean Castle, Robert Trossel and others equally of such low moral and ethical standards are caught out in the defrauding of people who really will clutch at even the most imaginary of straws. This nasty deceiving of people is worthy of the deepest contempt. Itâ€™s a con from start to finish and they all know it. in response to this Guardian post.
From The Independent now:
A doctor who exploited a group of “vulnerable” multiple sclerosis patients used stem cells that were not designed for human use, a fitness to practise panel found.
Dr Trossel, 55, exaggerated the benefits of treatment which was based on “anecdotal and aspirational information” and “scientific research that had been carried out only on animals”.
Dr Trossel did not have the necessary neurological or scientific expertise upon which to proceed with such therapy
Problem with having an uncommon surname like Orridge is the search results. My old blog is the 4th result in Google for her name. I can but hope that causes problems for her. And everyone else still involved? they should be jailed.
Jacqui is completing an application form at the moment – what for does not matter here – and there are a variety of questions along the lines of “If you had a million pounds what would you do” and “If you could invite 3 other people for a meal who would they be and why” – that sort of thing. It’s all good stuff and she has asked me a couple as I wander through to get a drink. Today’s was interesting.
“One half of the world cannot understand the pleasures of the other.”
She asked me who I would be if I could be anyone for 24 hours. I said a woman. She said Who and I replied it wouldn’t matter. We’ve done this conversation many times so it was surprising that she didn’t see that answer before she asked the question. Anyway, she persisted and I did think. It’s pretty difficult. If you are going to do something for 24 hours then you want to get something out of it. So being Bill Gates or Richard Branson is going to teach you nothing just like being The Queen, or Prime Minister. There is nothing from there you could bring back after that time which would benefit you, be of practical or even theoretical use. Money you could spend in a day but power? In a day? With all the red tape and nonsense layers protecting us from the whims of them? Wouldn’t happen. In the end I said I would be her for a day. Not because I want to know what it’s like to be married to me (I really do not want to know how I am from that perspective) but because I want to know what it’s like to be her.
Years ago I rang Jacqui at work said “What does this mean” and help the phone closer to one of the girls who was crying. I knew she knew that one cry meant hungry, one was tired, one was nappy. But I’d done those 3 so I rang her. She didn’t know but the point is back then she had the routine down with the child care. So she got the house done, the sprog fed/watered/clean, had her own time and it was all organised. I had none. So I wanted to be like her. Organised. In the end I got there but I was never as good but I knew I could be there. With J’s MS though I cannot be there. I know some of what it’s done but I don’t know all of it, can’t do because it’s so physical. Had to buy some washing up gloves. Not because the water is too hot but because she cannot feel heat, has no clue how hot water is. Been like that for a while but until I mentioned the water she didn’t think to tell me. So I’d be her. That way I would know just for a day how hard (or easy, no pulling the wool after that day)(yes, I know it’s actually not easy) it is, how much she could and could not feel, all the physical effects. Not that 24 hours would give a clue what 24/7/365 is like but a brief glimpse would be good. Of course it may be a very bad thing too. (This answer won me some brownie points too.)
Same for any partnership though?
Until her sickness do us part: why men leave ill partners
Men are seven times more likely than women to leave a seriously ill partner, a study has found. So why are males less able to cope? Times Online
I joined a forum recently for me. Nothing at all to do with Jacq. I joined one night in one of those brief moments where I (foolishly) believe that typing words into a forum can help. But in matters of the mind it cannot, at least not for me. It always struck me as odd that people will gather and talk about how they used to drink, what they drank, where they drank etc. Surely such AA meetings just reinforce drink? If you are going to stop, stop. Worked for me. Anyway, back to chatting online. There are a fair number of resources for mental health problems but they don’t actually fix anything. I’ve said before that I have a domain with a blog and I go there to rant about things, ponder, wail and everything else negative. Because you don’t know where it is the space is safe. I really can – and do – say what I want. And then I erase it some time later because the act of writing and publishing was good enough. But it doesn’t stop the same irritants happening again. Nothing can.
So in those moments – had one earlier whole going round Tesco with Jacq – “Hey, do you also seem to go shopping when all the other stupid people go? When people that cannot see wheelchairs are there? When people tut tut as you go by? When people just haven’t a single bloody clue how bad they make the whole experience? Won’t get out of the way?” – where I think talking to someone about it might help I have to realise there are only 2 outcomes: (1) the person agrees with me and we start ripping into everyone and everything or (2) the person says No and I call them an idiot. So it would not be constructive to talk, it’s destruction on both paths. Negative.
Maybe it’s the man thing – that we need a fix, we need the solution.
There is a phone downstairs and one next to me up here. Here is what happens when J calls me:
“Hi, sorry and I know you are busy and have work to do but the food will be on the table in a minute if you want to come down”
Here is what I want to happen when J calls me:
I just want the reason. All those other words just annoy me, they get in the way, it takes longer to say. She knows that I just want ‘Food” but finds it really difficult to reduce an entire sentence or two into a single word. And I cannot see her view either.
Sometimes someone from Social Services will come round and J will talk to them, tell them how she is etc. I have no idea why she does this apart from the woman thing about needing to talk, to share etc. I’m quite plain: “Will you help?” and when they say what passes for No – but they can’t just say those 2 letters – I tell them that there is no point, why are they here, they can tick the “Saw them today” box. Social Services? Complete waste of everyone’e time. They kill children don’t they?
So, back to the article. I wonder where and why these men talk? I have doubts they do. I suspect it’s just coping mechanisms because talking about something that cannot be changed in an exercise in pointlessness. It’s also wrong to say “less able’ because maybe we were never taught or never learned how to cope. It’s not a class in school but it is something you pick up from people you hang around with so if they don’t, you can’t learn. “less able” seems more negative way to say it.
Would have been more interesting to see an article where physical disability was a significant element as that changes things on a huge new level.
This may be repeating myself, it may be a post I said I would not write but hey, who’s counting..
On the one hand I don’t want to write about Jacq’s MS because it’s personal. How it is actually affecting her physically is very private, how it affects her mentally is something I could not adequately convey and how it affects our relationship is our business not yours. But on the other hand …. I want to write about what is not covered above but the above covers everything. I do not think Jacq would mind me writing more but it makes it no less private for her saying that (if that makes sense).
“I don’t want to die but I don’t want to live like this”
That’s what she says. She said it not an hour ago and it has been said a few times in the last few weeks. She said earlier she was ill enough to go hospital but why bother, they can’t do anything – and that is true. She is stressed she cannot do anything at all around the house, stressed that I am doing it, stressed that she cannot be the person she wants. Not a great quality of life when all you can do is sit at a table. And we have no idea what to do but wait for it to get even worse. Because it is. The difference in the last few months is significant, we are firmly in secondary progressive. She probably has been for a long time but it’s kicked in big time since Christmas.
What do we do when she can’t manage the stairs? No idea. None. There is no help anywhere, no social services. But then we don’t really know what to do now, or if there is anything but wishes. That will be a big event, a very hard one to cope with.
The fact we have no answers just means we answer something as it arrives. Can’t plan, can’t decide what we will do tomorrow, most days we can’t even plan the afternoon – can’t know until then if she can move enough. Means we really do live day to day in so many ways. It’s pretty hard going. Hard going for me. It must be hell for her but words fail, it is beyond description. She’s crying a lot recently.
For some bizarre reason we still buy a lottery ticket. Actually, it’s not that bizarre – she wants to own a house. She wants to own the house she will die in. I suppose people say that when they are after the house for their dotage but J means it. We had a discussion about Switzerland recently. Wasn’t fun.
Just like everyone else in the world in bad situations not of their making all we can say is “It wasn’t meant to be like this” and wish that it were different.
The last time I had a needle stuck in my hand was in a Birmingham Travelodge. Mrme did it as he’d not pierced anyone before and I offered my hand as to test on. The piercing in the hand web didn’t last long but they don’t seem to just there, too mobile I think. But yesterday I stuck a needle back in close to there – and it hurt in a strange way.
J has been having some acupuncture to help with the leg pain and although it’s been tricky to see an effect yet it has had no adverse effects. But we have had to go to a hospital on the other side of the city for this and therapeutic effects don’t always travel so well. Because I’ve done injections before and done J’s interferon when she was on that I had said I would happily do it. Yesterday the nurse in the acupuncture clinic showed me – easy. She did one and I did the other 7. Technique is not tricky, J felt no pain, all was good. So now I have 100 acupuncture needles and a burn bin (time was I used to have great big piercing needles, a bigger burn bin, cauterising pen….). Anyway, one place the nurse had wanted to place a needle on J was in her hand so when we got back I thought it only fair that I try it first, see how it felt. So up here in the ‘office’ I got the needle ready and pinged it into the right place. It didn’t hurt, barely any sensation. But…
Ladies you will not understand this. Ever been whacked/kicked/hit in the nuts? There are (at least) two parts to the pain. The first is the pain to the actual site but that’s like normal pain – you get it, it hurts. But then there is that other pain, the one that renders you immobile, a deep deep agony of a pain that isn’t actually between your legs – remember that one, the one that doubles you up, the one you can’t dismiss as “Yeah I’m okay”? Well I thought the needle wasn’t in quite far enough – must have caught the top of the needle on the guide tube – so I gently held the needle and pushed it in. This felt… strange. I twisted the needle and I got that same deep pain in my hand. It was the same agony but in my hand. It was everywhere and it really hurt in a deep dull agony sort of way. I actually left the needle there because I didn’t want the pain to get worse by touching it. Several minutes later the hand felt normal again and I removed the needle.
J – “Did it hurt when you put the needle in your hand?”
Me – “No” (and I’ll be telling the truth too). Will I elaborate? Life would be hell if I did not.
Will I do it again? In my hand, no. Elsewhere, probably, could be interesting. Did I do something wrong? Probably but I’ve learned to not do that again.
The Red Cross just delivered some bathroom equipment which will help J. I had to test it first – after all I can hardly tell her it’s safe because it says so in the manual. It is very odd moving into and out of a bath when you limit yourself to the equipment and more so when it’ll be done in the wet. Machinery can be a nice thing but raising and lowering in a bath feels genuinely strange – and I could get out if I needed to. Apparently we cannot use it until the person who ordered it for J has been around and checked it, done a risk assessment and shown us how to use it. Well the guy checked it, she should have done the assessment already and I can figure the rest out all on my own. And if it can take me, it’ll take J. And it was indeed the Red Cross. Not the Council, not any part of the NHS. So either the Red Cross are filling a gap or the NHS are leaving that gap because they know the charity will fill it. As I have said before, do not think that Services we have – and that your tax apparently pays for – are there to help you. It is an illusion.
We finally have a downstairs toilet. The sparky needs to fit a light and wire that and the fan, but it’s otherwise there and working. J no longer has to fight her way up and down the stairs many times every day. This isn’t just a good thing, it’s a fantastically wonderful thing. It’s one thing to be worn by doing something you like and quite something else to have the strength to cope with the calls of nature – the second leaves no energy for the first. Add into this that the last interferon jab went well and although MS is never good, it’s on the better side of bad right now. When I get the names of the people who did it I’ll blog them because each one I would recommend without hesitation.
J’s avonex (that’s the interferon) arrives in a refridgerated van, packed in a box, in a bag, in polystyrene, in another box. Cool is important 🙂 It also comes with a bag with a sharps bin, travel information, lots of literature and more. No expense spared.
Part of the reason she came off it was that the day following the injection she was wasted. Moving was almost impossible, she hurt, her ability to concentrate was shot. Sundays meant full-on care and all in all not good by a long way. She dreaded Sundays and would even contemplate not having the jab. She said that by Friday she was okay and that it took the week to get over the injection. We all certainly remember what it was like and it is with quite some relief that the effect is not happening this time around. There is a slightly different effect though – it takes all the strength out of her body for the night. This is not a good thing when you need to get up. Luckily I’m here 🙂 Thing is, she is debating asking to stop the interferon again because of this but she cannot recall what it was like previously.
I’m telling her just how bad she was and that this time it’s not bad at all, but because she doesn’t remember she cannot compare the two experiences. The body does not accurately recall pain and bad physical events presumably for your own protection but this wasn’t in that league. It’s really odd that she just doesn’t remember an event that occurred weekly for several months and that lead directly to the interferon stopping last time. And this is bad because it might lead her to not wanting it again. Something neither of us want given we have established she is still in relapsing-remitting though with a lot of residual damage.
It’s very odd.
A few weeks ago I blogged that J was seeing the MS Consultant today and she would be asking for the Interferon-beta (Avonex) back. She saw him and he said Yes. (So I have no cause to have a go at him). Hopefully by the end of the month J will be back on the weekly injections and hopefully that will go some way to reducing the steepness of the deterioration curve. This is a good thing.