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Saturday, 20 April 2019

Do you need any help?

I was at the vet's this morning, sitting on the back of the boot of my car, assembling my chair, ready to take Liggy in. A couple, walking past, asked me, "Do you need any help?"

I get that people are trying to be kind, when they ask this question, but I find it a really stressful moment. Some people are quite offended if help is refused, and many people seem to think that I should ask for and accept help more often... but I'm never sure what to say.

You might also be a kind person, wanting to help a random stranger that you know nothing about, so I thought I'd share some of my quandries on the subject:

At the car

I load and unload my chair practically every time I go anywhere. It takes a couple of minutes to pop the wheels on, put the back up and pop the seat cushion on. The trickiest bit is the wheels. Because I love my loopwheels, each wheel weighs about the same as the rest of my chair. Because Loopwheels are English and Ottobock (the make of my chair) is German, they aren't quite compatible, so I have to have a washer on each spindle. Losing the washer is very easy and if I lose it, I can't use my wheels.

So if I accept help with this task, I'm trying to imagine what will actually happen. Will the person know how to assemble my chair? Will they listen if I try to explain the importance of those washers? If they lose a washer, will they magically reappear later, when I am stuck, or will I be alone and helpless then?

Repacking the car, after an outing, is probably a time when a bit of help would be appreciated but again, I'm trying to imagine what would actually happen. Would they put all the pieces exactly where I know to put them, so that when I arrive at my next destination, and I'm on my own and they aren't there to be helpful, I will still be able to function? Will they wedge the wheels carefully down the side, so that they don't slide to the boot opening? Or when I open the boot, will they fall out on me? Will they even know how to dismantle my chair without damaging it? Or will I have to show them how to do it, which would be more tiring than just doing it myself?

So what help would be really helpful? I'm wracking my brain, but I genuinely can't think of anything in this situation that I would find more helpful than just being left to get on with it. I'm really sorry. Don't mean to be unhelpful but I actually can do this job on my own.


We were in a Toby Carvery last week, and a member of staff came over to the gravy and sauces area and offered to help me. That was quite handy, as I was sitting there, wondering whether the gravy had beta-carotene in it, whether I should have my food dry, just have a little bit, or risk having another allergic reaction. Help was just what I needed.

The lady started with an open question - "Can I help you?"

I didn't think it was that tricky. I needed help to know whether the gravy was okay. So I asked her whether the gravy had carrot juices in (not everyone knows what beta-carotene is). She looked utterly baffled and repeated her question. I thought I'd better go for a reword. So I explained that I'm allergic to carrot and often gravy is made with the water the carrots have been cooked in and asked her whether she could find out for me. She replied by asking whether she could carry my plate.

Fast forward about 5 mins and she did eventually go and bring me the gravy granules packet, which didn't mention carrots, carotenes or anything else I can't have. Then she asked whether she could put the gravy on my plate for me. Now I know I'm awkward, but I'm not the greatest fan of gravy anyway (too many allergic reactions) so I said I would rather do it myself. I thought she'd gone, but she was still there waiting to carry my plate. I have to admit, my patience was beginning to wither by now so my request for her to let me through might have been a little more curt than I intended.


Gotta warn you, nothing baffles me more than this one. In general, the doors of accessible toilets are the perfect door! They are wide, light, don't close automatically, and have a bar that means I can close it behind me. So I do struggle to understand why so many people (men, more often than not) seem to want to help me go to the loo. I get near a toilet door, and people leap out of nowhere to offer to open the door. Now that wouldn't baffle me so much, except that often, the same people walk through those big heavy doors that swing shut by themselves, letting them shut in my face. These doors are too narrow, so I often fight to open both doors simultaneously, keep them open, and guide Liggy and propel myself through. If ever help was needed, narrow heavy doors are the perfect occasion for a bit of chivalry!

So do I need help going to the toilet? Yes, actually, I do. But I never get the help I really need, unless Neil is with me. Getting through the door, lowering the rails, getting myself onto the loo, etc... not a problem! Hovering over the toilet because the last person peed all over the seat - now that, I struggle with.

So when someone asks if they can help, what I desperately want to say is, "Oh, yes please! Could you just pop in before me, clean the toilet, mop/dry the floor (so Liggy doesn't have to sit/lie in a pool of water) and clean up any mess for me? I'm guessing though, that like the gravy-lady who didn't really want to know what help would be useful, but wanted to feel that she had done her good deed for the day, most of the men who stop me, don't have cleaning the toilet in mind.

Some rules for offering help

1. Think first. Is this a task that a person must do repeatedly, several times a day, every day? If so, they've probably worked out how to do it better themselves than I could do.

2. Ask/offer help but listen to the answer. Try not to have your own plan or assumption as to what help is needed. There is a lot of awareness of invisible disabilities these days. The invisible might be where help is needed most.

3. Only offer if you really want to help. This sounds obvious but I think many people offer help but it is to make them feel better or feel less pity, rather than to actually make me cope better.

4. Don't impose help. I didn't mention this earlier, but I have occasionally had people decide that I need help going up a hill, a kerb or through a door in my chair. Without asking, they burst into my world and manoeuvred me. The trouble is, my hands have been injured several times by people doing this. I got a really bad friction burn that bled for days because someone decided to help me up a kerb without checking where my hands were first. I've also had my knuckles crushed in doorways, too often to count.


Sometimes people offer to help, listen carefully to what help is needed and then help really helpfully. When that happens, I really really really appreciate it! We've just come back from Spring Harvest, where we attended events with 2000 people present. We were sitting with Liggy next to me but because the venues were dark and busy, sometimes people nearly trod on her... accidentally of course! There were two stewards there who really helped me by standing in front of her during entry and exit times, to protect her and me from being hurt. It wasn't a glorious task. Nobody saw them doing momentous things and commented on how wonderful they were. In fact, apart from Neil and me, nobody even realised what they were doing. But it was SOOOOOO helpful and I REALLY appreciated it.

I do like help. It just has to be helpful.

Oh, and by the way, I like helping too. So please let me help you sometimes.

Wednesday, 10 April 2019

Health warning!

Do you use a manual wheelchair?

Do you have nice big, strong arm muscles (like mine)? When I first started self-propelling in a wheelchair, I was the typical middle-aged woman! I had no arm muscles whatsoever and really struggled to go very far unless the ground was completely flat and smooth.

Fast forward to June 2016 and I decided, rather than be limited for the rest of my life, I would do something about it and get fit. So I lost a load of weight - almost 4 stone - and did the wheelchair equivalent of couch to 5K. It worked! I developed big, strong arm muscles, stamina in abundance and a back pat that could cause injury without ever intending it.

So all should be well really.



Last October, I was feeling very low and couldn't work out whether I was depressed or ill, so I went to the doctor. They sent me for blood tests - all of them!

I have a theory on path labs. There is no point in blood tests. They don't test them. They just make up results and feed the blood to either a room full of vampires or the Little Shop of Horrors.

The results came back and I got called in to discuss kidney function.

Medical Lesson 1

One of the ways they measure kidney function is by checking how much creatinine you have in your blood. They use this, along with your gender, age, weight, etc to calculate your kidney filtration rate. If creatinine levels are high, your kidney filtration rate must be low, because the kidneys obviously haven't filtered it properly. Or something like that.

So my creatinine levels were high, which meant that my kidneys might not be doing their job very efficiently... so just to check, I was sent to have more blood tests.

The results came back worse. So they put me on 2 months of vitamin D and told me to have more blood tests when they ran out. Not being one for half-measures, I Googled the situation and checked what else I could do to lower my creatinine levels. So I spent 2 months restricting my coffee intake, drinking plenty (and I mean plenty) of water, checking my blood pressure, trying to lose yet more weight...


It got worse!

I spoke to a nurse practitioner, who basically said I was looking at a possible diagnosis of chronic kidney disease (I had already worked that much out) and sent me for more blood tests, and a urine test too.

This morning

As I was having breakfast and preparing myself for the likelihood of impending doom, I suddenly thought, I've Googled how to lower creatinine levels but I haven't checked what could cause them to be high. So I did. And that was when I began to think they might be missing the obvious. When I say obvious, obvious to a doctor, who knows about these things. Less obvious to a pleb like me who doesn't.

Medical lesson 2

Creatinine is produced by muscles when we exercise. When I say exercise, I mean like proper, full-on, tough exercise. Weight lifting, body building, that kind of thing. Creatinine is a waste product and enters the blood stream. When they work out your kidney filtration rate, they don't assume that a disabled, middle-aged woman might have the exercise profile of Geoff Capes.

Back to this morning

I got to the doctors, ready to ask whether the extreme exercise that is self-propelling a wheelchair for miles each day, through carpet, uneven pot-holed pavements and up and down hills, etc. could be why my creatinine levels are high, only to be told... everything's fine. They've come right back down.

And that was when the penny dropped. All my blood tests were late afternoon/early evening, except the last one, which was first thing in the morning. Actually, for the first time ever, I was number one of the day. Dracula's first victim! This time, they tested me before I did my usual day's exertions.

I ran my theory by the doctor, who said that was highly likely to be the reason and told me to have another blood test in 6 months. Needless to say, I'll be there before they even open!

Just thought other wheelies might want to know. If they start suspecting kidney disease, just bear my story in mind. Whilst all's well that end's well, it has been pretty worrying contemplating a potential life without coffee for the last few months, not to mention any actual treatment that I might have needed!