Since starting this CGM trial, there have been two thoughts at the forefront of my mind.
The fact is, CGM is an expensive business. It's not spot on and can't be relied on completely, but for a diabetic to know at a glance what their sugars are doing, without having to invasively stab their finger and force themselves to bleed - is wonderful. I won't lie, there have been times I've been frustrated and times I've questioned if the system was as valuable as the sales reps would have you believe. However, I am a very demanding diabetic, who is always looking for new ways to manage a disease which seems to find new ways to surprise me everyday.
I have heard many times about claiming Disability Living Allowance for their condition and provide them some assistance. Until now, I have never felt the need to claim. I have never been faced with cost to manage this condition and have never really seen DLA as something I would benefit from.
But having been faced with a potential cost of £180 per month and being only at the beginning of a career and earning money very much in the 'little leagues', I looked into it this evening. I was never really sure why people would need extra money for diabetic management - until now.
So I googled "Diabetes+DLA" and found some really interesting - and sometimes frustratingly ignorant comments.
There were many diabetics out there who seemed to be claiming DLA on the premise of needing sugar free food claiming it was more expensive. Claiming for buses to hospitals despite being able to drive and admitting to owning their own cars! I understand that for some appointments (retinal screening) you aren't allowed to drive, due to the drops they use to dilate your pupils making you all but temporarily blind. But nevertheless I was surprised by some of the comments posted. Any specialist worth the more than the value of the paper their qualification is printed on knows that products aimed at diabetics are no more than a gimmick. I would be highly concerned if people really were receiving such advice. Sugar free food in my experience is no more expensive than its full sugar counterpart.
On the other hand, I read comments which I found surprisingly ignorant. You would think after 23 years of trying to explain this disease to anyone who will listen, I would by now have realised that some people just don't have a clue and most likely never will.
I read comments like, "There are much worse things than having diabetes" - yes, I completely agree that there are, but that doesn't change the fact that diabetics never get a day off, they will never have 'total' control, and every diabetic at times has a low or high which takes them by surprise and scares the living s*** out of them. And no matter how many worse things there are, how dare people assume that diabetes doesn't destroy a huge portion of your life, limiting you in countless ways. There are diabetics who suffer hypo unawareness - these people can be affected by debilitating hypos to which they only become aware of when they regain consciousness, hours after they hit the floor! Is that not bad enough to feature on the scale of 'things which 'disable' your life'?? There are diabetics who describe themselves as 'brittle'. Now, whether or not this truly exists is still a matter of great controversy, but being someone who can swing from 2.2 to 30 in any 24 hour period for no apparent reason and who has to weigh her food religiously to try and get within reaching distance of 'ideal' control, I find it baffling when I sit down to eat with other diabetics who guess what dose they may need, do an injection and are spot on two hours later. I just can't get my head around it and am inclined to agree with people who fight the case for brittle diabetes that yes, for some people control isn't even a word in there vocabulary. Instead, they use the word 'cope'. I doubt I will spend one single day of my life within these targets - even as a pump user.
So am I right to think that CGM may benefit me enough to warrant applying for DLA? I almost feel dirty considering the idea, seeing as apparently because I don't have any amputations and can still dress myself, I don't rank high enough on the scale of being a deserving candidate. But at the same time, I know that at times I have to do anything up to 25 blood tests during the day (and night), just to try and keep myself at a reasonable level and the more I test, the more frantic and obsessed I become. Does that make me deserving?
Personally, I have never considered myself 'disabled'. The label in itself and the stigma surrounding disability is problematic from the outset, but as someone who has voluntarily made the decision to wear an insulin pump in the hope I may get some sort of stability at the end of it, do I have a right to aim higher? To hope that with a bit of financial support I might gain a few more inches towards a normal life? Isn't that what DLA is for?
I have no idea. I don't know whether I will claim or even get accepted, but I find it frustrating that while there are those who use the system inappropriately, there are also those who genuinely need a little more assistance. Someone who makes the decision not to drive, for their own safety and for others is in my eyes deserving of a little extra help. If they choose to get the bus to protect other people, then yes, they can have all the bus fares they want! Someone who chooses to eat only an organic super-healthy diet, because their sugars are better when they do is to me, someone who is deserving. When I did my detox, I had never seen such fantastic sugars in my life. For me it wasn't something I could maintain, partly due to the sheer cost. My grocery shopping bill tripled while eating like that because organic foods, nuts, seeds and specialist milks do cost more. Yes, it is extreme, but is it not better to claim assistance now and improve your chances of not only living a better, but also longer life rather than claim from the NHS for reparation procedures to eyes, kidneys, feet and heart problems later?
As for effect, even if CGM improves my control a little, is this not an effect worth striving for. DLA is there to assist people in making their lives more normal. Testing 20 times a day is NOT normal. It's not something you ever 'get used to' and it's not something anyone should have to go through.
Surely if it improves the already restricted life of a diabetic, then the DLA has been allocated for all the right reasons.
I would be really interested to see what people think about this. I have only just begun looking into it, but can already feel a fire starting out already.