Month: January 2018

Inspired!

I was looking at Facebook yesterday. Last night, there was a documentary on C4 about a stroke survivor, so on the C4 News feed, they advertised the program. There were lots of comments about how this woman is inspirational or courageous. One comment even said she was lucky – I can understand this in the context that even despite her injuries, it could have all been worse. But thinking of this woman getting up every morning, looking at herself in the mirror, do these people really believe she tells herself how lucky she is?

I remember the only time since the stroke that I was told I was “lucky” – it was by an aphasia-sufferer who hadn’t yet seen my disabilities, but it made me laugh. And after all, maybe from her perspective I am? Being unable to communicate as effectively as you once could must be horrible. As we talked, and she subsequently found about the physical limitations, the reaction changed from lucky to “poor you”.

But at the risk of being non-PC, I’m not sure that inspirational or courageous are the right words. As a survivor myself, I’m not sure it particularly takes courage to get up in the morning – it’s a necessity in order to do what we have to do that day. If we didn’t do that, we’d end up just shrivelling up in bed. I don’t think it’s courageous, particularly, to do what everyone else does, to want to get on and live our lives as best we can. Don’t get me wrong, I’m really happy that this woman is picking the pieces of her life back up (including making documentaries), I’m really pleased that someone like Andy Marr has been able to resume his career fronting one of the most heavyweight current affairs shows on UK tv, but is it really anything above-and-beyond what any of us would do? And if someone wants to feel inspired by that, good luck to them. But I really think it is something that we would all do if we were thrust into this situation. I think we’re all surprisingly resilient, we’d even surprise ourselves.

You know, even in terms of what we actually do in life, when I think of what I do (I have no idea whether this girl does anything in terms of raising awareness of stroke), all it really is is chatting to people. It’s not rocket science. Really, anyone could do it. Sure, I can talk from the perspective of having been through that experience, so I do recognise that there might be some added-value in me going along as opposed to Joe Bloggs who has no experience of strokes. But really, it’s not as if nobody else could do a satisfactory job.

I get similarly blasé about charities giving out awards for things like “inspiration of the year” – isn’t it just what any of us would do? Certainly, those or us who get involved anyway? To go beyond that and have awards for this and that isn’t eally news, it’s more the charity hoping that mainstream media will pick up on the event, and raise awareness among the public a little.

Eye Clinic

Up at the hospital today, this time as a patient. Eye Clinic.

Another noncommittal scan. The same advice as last time, that laser treatment is available. The same reservations. See here if you’re interested

I don’t really like going there, because it is a stark reminder that bit-by-bit, this disease is progressing, and sooner or later it’ll get me. I also get frustrated because nobody will give me a straight answer to the question, “But surely we can measure, or at least monitor, this progression somehow?” Maybe the answer is simply “That’s what we are doing.”, but the one thing I don’t have a handle on is how urgent any of this is. The consultant is happy to tell me all the factors at play (to some degree they’re irrelevant, in the sense that the treatment is already clear) but cannot/won’t give me an idea of the urgency.

Anyway, that was today.

Testing, 1, 2, 3

I follow a couple of diabetes-related groups on the internet, and if you’re so minded, it’s possible to have heated debates with people on the subject of how often you should test yourself. I mean, test yourself as often as you want, but bear in mind that for each test, you have to prick your finger, so you really have to ask yourself whether pricking yourself too frequently does it any harm. For example people who have pricked their fingers for many years often complain of poor circulation in their fingers and toes, but the Catch 22 is that diabetes itself causes poor circulation!

Anyway, I thought I’d describe my routine. Bear in mind that as I’ve blogged many times, I take insulin. Twice a day.

My daily testing regime, on top of that, is just to satisfy myself that I’m taking the right amount of insulin. To achieve this, I normally just check myself just once per day, before any food or meds, just to get an idea of what my baseline blood sugar is.

If the value is higher than I’d like, I make a note of it for future reference. I try and think back to yesterday – what did I eat which could have caused this? It’s invariably something high in carbs. A bag of crisps, maybe? Not necessarily anything sweet. Sugar is a carb, but it is a mistake to think that sugar is the only carb.

Following this, I’m very strict for a day or so. If the high value were due to food, then the test result should go down. If the test doesn’t go down, and it’s been that way for a number of days (I don’t have a fixed number of days), then I think about increasing my insulin. (In theory, if the number were consistently low, I’d do the opposite. But it doesn’t tend to happen in my case.)

If I do decide to increase my dose, I have a choice: to increase the morning dose (immediately pre-breakfast), or the evening dose (immediately pre-supper). To make that decision, I’m back to testing once again, so I can see how my sugar does at different times of the day. Once I have made a decision, I will increase the dose by a small amount at a time (maybe 5%). The process then starts over.

Daily tests I generally take at least 2 hours after food, just so that it doesn’t skew the result. Again from this forum, I’ve also heard that 90 minutes is an acceptable interval, and don’t really think it’s something I care enough about to argue the point.

Trials and Tribulations

Had a hypo last night in bed, so was eating Jelly Babies in bed at god knows what hour.

Don’t have them very often these days. Not a lot of food in the house, so have not been eating as much these last few days. And haven’t been snacking, which is actually a good thing.

So following my sweet treat, my sugar was back at 11 this morning. Very average, given the readings I normally have. It was only 6 yesterday morning, so maybe I should have known?

Harlow Stroke Support Group

I was chatting to a woman the other night, a friend of a friend, who is involved with running the stroke group in Harlow in Essex, on the outskirts of London (I think). Their stroke group has over 275 members, she says.

I couldn’t help thinking of the last peer group that I went to, when four of us turned up.

Reasons? Well, maybe it is that people think we’re a bunch of idiots, and they decide it’s not worth coming, but to come to that conclusion, you’d have to make at least one visit. I mean, I do think there are a few people who fall into this category, but only two or three. Possibly as many people again who are irregular attendees, just because they’re recovered enough to have other commitments such as jobs.

Salisbury is a city, so there is some kind of “target audience” within reach, surely? Certainly, I visit the stroke ward regularly and there’s never a shortage of people in there. I mean statistics say that the vast majority of strokes aren’t fatal, so surely it’s reasonable to assume that the people I see in hospital will sooner or later be living outside of hospital. But there again that statistic can be obfuscated – a single stroke may be unlikely to be fatal, but what about when someone has several strokes? Those odds must stack up, so perhaps fewer people actually survive to make a recovery than we think? I wonder how these values are counted?

But Salisbury District Hospital covers an extremely large catchment area in terms of square miles, most of which is rural, and some of it not even in Wiltshire (which skews a little the traditional county boundaries of e.g. the Stroke Association). Even places which you’d say are not rural, the public transport is very poor (in general, although this is consistent with my own experience) so an individual’s mobility becomes a factor. Certainly it is undoubtedly easier to get about, the larger the city.

I suppose another thing is what the group actually does. At our group, there is no organisation (something I like), we drink coffee and just talk about “stuff” for a couple of hours. The content may be stroke-related, maybe not. There are no constraints. I was signposted to the group by my then Stroke Association co-ordinator, but there is no Stroke Association involvement on a session-by-session basis. This other group does thinkg like speech and language, and chair-based exercise, classes – all brilliant forr stroke survivors in general, it sounds like these Harlow organisers do an excellent job, but possibly not so much to the specific people who currently attend in Salisbury. And, I suppose, there are a couple of other groups in my area which cater for someone with those requirements, although personally I prefer the far looser content that our group has, and it happens to be in a more convenient location for me.

Maybe the reasons are more straightforward? Strokes generally leave people disabled and with limited mobility, so maybe they just end up feeling too isolated? That seems fair enough, but a couple of the Salisbury attendees use wheelchairs – one of them lives outside Salisbury and relies on a couple of carers to transport her, so presumably it takes some not-insignificant effort to come along. And then there’s me – I obviously have my issues but I’m sufficiently determined to go to these events, and sufficiently able, and am sufficiently lucky to have public transport available to me. But maybe somebody’s willpower plays a part?

It’s a difficult one. If I were in a position to do so, I’d like to try and tease some of these answers out, obviously with a view to increasing attendance at our peer coffee group. But maybe the people best-placed to be able to get in touch with someone would be the ward itself? (i.e. someone who already held names and addresses and are already familiar with data protection issues, contacting them maybe six months after discharge?) But there again, the NHS probably has enough on its plate as it is. Plus, we’re now in the realms of social care. Certainly though, just knowing that you’re not alone in your predicament is a big step forward. All around me, I see organisations (including but not limited to the NHS) that have been diluted down so much that these issues are far too “big picture” to really be solvable. And, in my position as a humble volunteer, I can (and am obliged to) shrug my shoulders, a thought experiment.

This post was a bugger to write today, by the way. Very stuttering – I had a vague idea what I wanted to say but it was only really by writing it down that I’ve been able to get it clear. I hope!

If anybody happens to read this post and is interested in coming along either to the Salisbury or Harlow groups. then please get in touch with me. Even if you’re not in either area, I can ask the Stroke Association, on your behalf, or you can contact them directly.

A bit of fun

The Light Switch

Really pleased this morning, I’ve achieved what was quite a longstanding goal. The first time was a couple of days ago, the second was just now.

The goal? To use my bad arm, unaided, to switch the kitchen light. Not much at all, but it shows how I’m getting gradually more movement.

The switch in question is on the wall, around 5 feet off the ground. Around about shoulder-height. With some degree of effort, I can get my arm to the horizontal, but just getting it that few inches higher, I haven’t managed. If I extend my arm too much, it gets too heavy and I can’t support its weight. So I have to move the bits of my arm very deliberately – it feels exactly like a crane. A Herculean effort. But, a couple of days ago, I finally conquered it. Even when I get my hand high enough, I’m not really dextrous. The reeason I can do it at all is just because I us my fist a bit like a club! But, one thing at a time…

Right now, I’m still at the stage where I sometimes succeed, but mostly I fail, so there is a further goal – to get my success rate up to 100%. Yesterday, for example, I crashed and burned. So it’s kind-of a continuous challenge for now, until I’m reliable.

This post probably seems quite trivial. I hope so. Be grateful that what takes me a year, you can do with no effort whatever.

I don’t really see any improvement from day-to-day, so having finally accomplished this after trying for so long is a milestone. My mindset is that all of these disabilities are temporary, that one day I will overcome them – this seems to be a typical trait of survivors no matter what their current situation. I think I need that sense of hope to keep going.

Determination

I had a meeting up at the hospital with some of the staff. The subject was getting a kind of peer group up and running. The kind of thing I do already (on my own) at my drop-in, but they wanted some more survivors involved, plus current patients. The hope was to bring the peer aspect to the patients.

Overall, it seems like a good idea. I pointed out though that for any stroke survivor, there is a need to have a pro-active attitude, first and foremost. To want to recover. So even though all the patients might be close proximity, a patient with that kind of attitude would benefit the most.

It is easy just to use myself as an example here. Attending something at the hospital also implies that I:

  1. Get myself washed and dressed, and out of the house at a certain time. OK, this is easy now, but that wasn’t always the case.
  2. Walk a half mile to my nearest bus stop (ditto)
  3. Catch a bus (the easy part), which involved a one-time application for a Disabled bus pass

So I had to be quite determined to overcome these obstacles, before I could even think about doing something useful. They seem trivial, don’t they? But that’s stroke for you – molehills become mountains. They’re all hurdles that somebody needs to jump over as incidentals. And there’s no point complaining – that is just the nature of the beast now. When you want to do something, these are just the hoops you’ve got to jump through along the way. For me, I was clear from early on that I needed to make myself busy to get a good recovery – that is why I started volunteering. That rule has got to apply to other people, too, a survivor will inevitably face challenges that they must be determined to overcome. We can have all the support in the world, but I think we have to be prepared to push ourselves…it really is sink or swim!

On the subject of support, I’m not sure if this is typical or whether I was just a slow starter. I was a good six months out of hospital before I felt able to reach out for support, so it will be interesting how many current patients will benefit from the current venture. My gut feel is that it is a good idea, but maybe too soon?

But I need to offer them my support and am happy to do so. Week-on-week, it isn’t much different to what I’m doing anyway.