Mobility Descriptor and other issues. Help!

Hi

re. 2. Moving around
I have read the 70-page guide thoroughly, but I'm afraid I'm still perplexed about which descriptor should apply to me.

Excuse very long post. I'll use bold to help make it easier to read

Description of my mobility problems:
I suffer a complex illness, which affects me with fatigue and cold intolerance (amongst numerous other symptoms) ; most problematically, I am affected by hypersomnia, light-headedness and mental confusion when fatigued ; and by muscle spasms and ataxia, when over -exercising*. (the difference being that these last occur whilst actually walking or otherwise physically active, often without warning. The the first group of symptoms affect me subsequently, with the onset being delayed until the next day, sometimes)
*Over-exercising can mean anything from walking across a small room (on a bad day) to spending half-an-hour doing light housework (on a good day)

I have found I can reduce the frequency of these symptoms by:
A) taking physical activities slowly with frequent rests. Rest-time exceeds activity time.
I now use a 3-wheel walker when I have to walk more than , say 50-100 metres (.i.e. to local convenience store and back) And also for shorter distances on a bad day
C)eating frequently to keep my blood sugar up. (This can be very problmatical, due to my numerous food intolernces. These make eating out impossibe, and presently limit my “packed lunch” options to soft fruit and/or 2-3 specific brands of boiled sweet. So I will usually eat just prior to going out, and be sure to return within 4-5 hours, so as to have something more nutritious to eat)
D) carefully avoiding certain foods (eg gluten , corn starch, dairy, all fats and oils, peanuts, almonds, artificial sweeteners, spices and anything “packed in a factory handling...”)as these not only cause severe digestive symptoms, pain etc, but also affect me in the same way that exercise does some 5-6 hours after ingesting them.
E) wrapping up well, and avoiding be ing outdoors in cold weather, except for very brief periods. (again, 50 metres or so to corner shop is about my limit, when weather is very cold)

With the aid of my walker, I can and do (on a very good day) occasionally walk much longer distances, weather permitting; but this activity is punctuated by many breaks, I am unable to repeat this feat often ( a few times per year seems to be my limit) , and am always likely to subsequently suffer extreme fatigue, mental confusion, hypersomnia and ataxia later that day, or the next day. Regardless of what initially triggers them, these symptoms will often continue for up to 3 days, and occasionally up to a fortnight.

As regards cold sensitivity, I find that just standing round in the cold can trigger the same symptoms as over-exercising, and that it is frequently too cold for me in this respect, during the Spring and Autumn, as well as Winter. Indeed I find it difficult to keep warm indoors, throughout most of the year, even with the heating turned up. This very much complicates my mobility issues. I have looked into the possibility of moving to a warmer climate, but found that I would then lose my entitlement to benefits, even within the EU.

The above measures are not guaranteed to be effective, as triggers are so numerous and not entirely avoidable. So my goal is damage limitation. But between them these measures, coupled with great caution re. diet, have enabled me to be free of the worst effects of fatigue for about 50% of the time this current winter, and for most of the time, last Summer, which is the best I have managed in many years. That is, given that I do spend the vast majority of my time indoors, and I do spend the best part of my time resting.

If I didn't take great care, as described, to limit my activity, then I would be too ill (from the after effects of over-exertion)to go out at all for the vast majority of the time, and would suffer muscle spasms frequently (with consequent risk of falling, and subsequent hypersomnia etc.) Indeed, these problems used to occur during and after almost every excursion until I identified my personal limits and learned to plan accordingly. I formerly missed numerous important appointments as a consequence.

Once per week I visit the Supermarket, with help from a friend, who drives me there. We often visit the post office, or some other shop at the same time. I find that, with the trolley for support, I can usually walk around safely for a period of 1-2 hours. This might seem a long time. However, it entails very frequent, long stops to examine labels etc. (made all the more long by “brain fog” which often affects me during these visits ). I could certainly not walk continuously for anything like that kind of period, so these halts provide a necessary break, and I am only actually walking 1-10 metres at a time. Even so, I am only rarely able to repeat a similar feat on the same day; also I often find that I have “overdone it” on these trips,in spite of all precautions, and am very fatigued for 2-3 days subsequently. I also find that I am often too fatigued to unpack my shopping at the end of the trip, and so most of it gets left until the next day, or later, with resulting spoilage.

I very much need this help with transport to the shops. I now avoid using public transport, as the act of travelling by bus (including walking to/from bus stops) leaves me no further energy to expend at my destination, thus negating the point of the trip.

In view of the above I think it obvious that I cannot mobilise reliably and repeatedly. However, the quoted distances defeat me, being pretty much meaningless in my case, as the same thing applies irrespective of distance. I suspect that I ought to choose e)” Can stand and then move more than 1 metre but no more than 20 metres, either aided or unaided.”  as the Supermaket trips (which involve repeatedly moving distances within that range) make it evident that I am unable to sustain repeated mobilisation over that distance for more than a fraction of any given day.

Here are my questions:
A) am I right in thinking that e) is the correct response?(if not, which one is correct? )
Is the info I gave above, in those words, suitable for inclusion with the form? Or would you modify it?


I must add that my family etc do not consider it is safe for me walk about unaccompanied, especially when crossing roads, as I am prone to absence seizures, and have often been observered crossing directly in front of moving traffic whilst unaware of my surroundings. This should be repeated, I suppose, for the sake of consistency.

However, I was only awarded the lower rate “mobility component” of DLA. On reflection, this only makes sense if one supposes that they took account of my absences but somehow overlooked those other, more disabling points, though they were certainly mentioned. ( I have walked around unaccompanied all my life, despite having that absence problemall my life. It is only in recent years that I've felt myself to be disabled)

I therefore think that I should add the thing about the absence seizures as a footnote(just as I have done here) so that the other issues are more salient. I really don't want the more physical issues being overlooked again. Besides the obvious financial difference, this “lower rate” assessment can impact on available services, as I have since discovered.

One other footnote: I am really unsure what to call these episodes of “muscle spasms”, and what to say about them. Sometimes they are simply that: a sort of rapid oscillating motion, most often beginning in my calf , which is liable throw me off balance. On occasion my legs have walk backwards, when I mean to walk forwards, or make other wayward motions. And my arms have often been observed to stiffen and be raised in a peculiar fashion, , though I am seldom aware of that. Often (espeecially if I am in a position to rest immeditely, and have no need to walk further) that is as bad as it gets. But the worst episodes do appear excatly like epileptic fits, and have sometimes entailed loss of consciousness. And my speech is often slurred afterwards

For this reason, amongst others, it does very much appear that I suffer from epilepsy; however, epilepsy was “ruled out” by an incompetent and hostile neurologist , who refused to believe in my symptoms at all . This was about 4 years ago, and I subsequently had my ESA stopped. Also, at that time, I didn't realise that I was sometimes losing consciousness (Nobody had told me!) so it was recorded that I didn't lose consciousness. This error was never corrected in subsequent reports, despite my asking and asking until blue in the face. Other miscommunications have also been similarly set in concrete, so, unfortunately, the resultant reports bear little relation to reality, even where they discuss the more salient symptoms (most of them focus attention on more peripheral issues)

My current neurologist feels that is not worthwhile re-testing for epilepsy, as the test is not likely to throw up any hard evidence. (they usually don't- not even with diagnosed epileptics) Whilst she privately agrees that epilepsy is likely (and she has certainly prescribed suitable medication) she has avoided putting this in her reports. As several consultants have repeated the “epilepsy has been ruled out” phrase , this is still very salient

I have been prescribed various anti-seizure medications, but had to discontinue them due to adverse reactions . I now avoid almost all medications, due to intolerance of corn starch and other base ingredients, as well as various drug allergies. This creates quite a problem as regards supporting evidence. I have no neurology appointments in the pipeline, my last was maybe 9 months ago, and the subsequent report concerned my Trigeminal Neuralgia and craniopharyngioma, neither of which is especially relevant to my claim (the first affects me less than 50% of the time; and the second is thought to be too small to be symptomatic as yet). As drug therapy proved useless, I expect the NHS will lose interest in my case , since that is the only kind of therapy they are willing to offer. (I do expect to be assessed for mitchondrial disorders eventually, which would explain a great deal, but it is an “extremely long queue” , even by NHS standards, which would mean several years, I assume).

My medication list therefore looks like the medication list of a well person, consisting solely of asthma inhaler (which I rarely need to use, at present ) and over-the-counter antihistamine syrup (And I limit my usage of this, due to a -relatively mild-intolerance for one of the ignredients. I don't want to aggravate that intolerance by frequent exposure) I actually have been prescribed antihistamines, but my GP was not willing to prescribe the syrup-(it being much more expensive than tablets) and I cannot tolerate the tablets. Thus I do not have a current prescription.) It was also recently recommended , by an Endocrinologist, that I take thyroxine but he also not that , given my intolerences, it might be best to simply not medicate for this deficiency. Similarly , I have been prescribed a Vitamin D supplement, but eventually had to have a singe-shot injection instead (which only needs to be repeated annually, if at all) , as no suitable oral form could be found

So, my last question is: how to best sum up this “seizure” issue? I really don't know how to get across the seriousness of it, and also how to maintain credibility? My problem with drug therapy is really unfortunate, in this context, as an ongoing prescription for anti-sezure medication (which I would otherwise have)as well as various other medications would surely outweigh the old “nothing wrong with her!” report.

It is actually hard to make any sense of many of my symptoms without invoking epilepsy. But I am ever loathe to lay claim to a condition with which I have not been diagnosed, so this often leads to awkward, embarrassing situations, not least when claiming benefits.

I know they say that diagnosis doesn't matter much . But in my own case I am sure that a clear diagnosis would help enormously, and I feel very unconfident without one. It took two years (and help from relatives, together with an actual video of my walking difficulties) to convince the medical profession there was anything actually wrong with me. It took another two years to get my ESA re-instated. And I am still in the position of having to describe a very complex, unexplained set of symptoms and hoping to God I get believed.

I could, of course, explain all this in detail, as I've explained to you, but both experience and common-sense assert that the more pain one takes to explain a thing, the less information will be digested by a busy assessor, let alone believed. So, I don't know what the heck I can do about that!

I do intend to send in a statement by the friend who gives me a lift, as he has witnessed numerous incidents. But like me, he is very much inclined towards understatement. Like me, he has Aperger's syndrome (Also, lacking official diagnosis, due to the usual NHS frustrations) so there's very little chance of getting him to change that habit. And, unfortunately, nobody really witnesses the ongoing effects of my fatigue, because -naturally- I don't receive visitors, nor go out, when severely fatigued.

Thanks for taking the time to read this

j

Thanks for the reply. Yes, that was the main issue. I did try to address another issue in the second half of the same post, though which was silly. . Sorry, i'm panicking, I've been really ill this past week, when I meant to get on with this form, and now the time pressure is really getting to me.

I can see that I do need to add a great deal more in the way of explanations and qualificactions. But also cut down on the wordage. I don't see that's possible. It will just have to be wordy. It basically comes down o a multi-faceted illness that becomes impossibly severe if I don't pace myself carefully. Or even if I do pace myself, all-too-often , but pacing helps.

Obviously I should make mention of what I can do, on a good day. As I did. But making it clear that it's only on a good day . And saying how how rarely such good days occur (as I thought I had) And making it clear when there are health repercussions , such as severe fatigue, from doing those things (as I thought I had)

Well, obviously I didn't make any of that clear enough.

Feel free to ignore the rest of this post. I've spent 3 days writing it, and it's actually helped me to “think aloud” in this way. Though I am adressing you, (and feedback would be very much appreciated if anyone has the time) I have now taken note of the request to keep posts short" Sorry for not complying

As for “being sure to return within 4-5 hours” I was actually thinking of scenarios like, say, attending an hospital appointment in another town, not going out socially. I very rarely go out socially, because, if it looks like being too difficult and demanding (as it nearly always does) I just politely decline the invitation. No problem there (besides social isolation).

I think I have to say, quite explicitly and forcefully : the things I'm struggling with these days are generally things that actually need to be done. I long ago gave up the optional things (eg visiting the local library, going out to meet friends, visiting friends and family, joining various groups, going out for walks, doing further education courses. All consigned to the past) because the chances are that the effort involved would make me very ill, and compromise my ability to look after myself even further. Not worth it.

My over-riding problem right now is that I've become too dependant on my only remaining local friend. He doesn't mind that at all , but it's neither sustainable nor fair. He has his own life, is due to retire, his own health is failing, and he's seriously thinking of moving abroad. . If I could somehow establish the principal that I really do need someone to drive me to he Supermarket etc then he can move on with a lighter heart, and I can maybe stop fretting as to how I'll manage without him. So my problem here is matching up the reality of actually needing that support with the assessment criteria. That surely ought to be possible.

I wish could just leave out the other statements you highlight, but I can't because they're too true; and might be observed. though it looks like I need to make it a lot more clear that

a)I only ever do certain things on a particularly “good” day (eg in the case of walking a relatively long distance)
b) such good days are exceedingly rare
c)I've normally suffered unacceptable health consequences from doing it.(been too ill to care for myself properly, in subsequent days )
d)I find it so debilitating that I couldnt possibly repeat it during the same or subsequent days if I wanted to.
e)Also, importantly, I didn't think to make it clear what motivates me to ever to walk far.. In one case I needed money and had no way to get it without walking to the Post Office (about 1 km distant) On other occasions, I've walked the same distance to My GPs surgery., because the only other option was to cancel my appointment . On another occasion I was stranded (due to an unexpectedly re-routed bus) on my way home from an hospital appointment. That was the worst, as I already felt exhausted. I just sat at the bus stop for 30 minutes or-so, recuperating and thinking, then walked home (maybe 500m ) very slowly, in stages, then slept for a week.
f) a really bad day is a day when i'm suffering the after-effects previous over-exertion, or some other trigger (eg getting too cold or food intolerance reaction). on a bad day I usually don't go out at all, because I feel too weak and groggy to keep my balance, or else i'm fast asleep. I might feel Ok for a random hour or two, but that's unpredictable.
g) How often bad days occur depends on how careful I am. It's nearly all the time if I don't carefully pace myself, during good days It's presently 50% of the time but will likely improve in the Summer months
e) It also depends on on what else I do that day. eg If I wash myself, change my clothes, prepare a proper meal, do some washing up, wipe the microvave etc, AND go to the shops all on the same day, that's a recipe for disaster, because the fatigue builds up. So I'll aim to do most other things the day before I go out. ButI can't really plan things effectively, as my health isn't that predictable. So I'm always trading one thing against another, and neglecting myself and my house for long periods. I do make sure I eat frequently , that takes top priority, but it might be just a banana or some microwaved jacket potatos repeatedly for every meal. That's just part of the price of being mobile
f) This is, in a sense , a CONSTANT problem, because I never have such a good day that I don't need to be careful that day.

Obviously I'd never walk those distances, if I only had suitable transport. I avoid taxis, of course, because I can't afford them. But I've had to resort to using them on many occasions anyway.

I avoid buses too, because those lttle walks between stops have a cumulative draining effect and I can expect to be very ill for the next few days aftrwards, even if I've done nothing else to tire myself that day

I suspect it would help a lot if I added that kind of info.

The really tricky one is the Supermarket thing. Thanks for pointing that out. In my mind that seemed like the least tricky one, because it actually highlights some of my problems. Also, it's the only thing I do on a quasi-regular basis. And it's clearly something that needs to be done. . But now I see that it neds a lot more explanation to see how it's highlighting problems. And I need to bring my neurological problems in as well, because it's all inter-related.

Item : Unlike most people, perhaps, I can , and often do “rest on my feet” because there;s seldom a seat nearby when I run into difficulty out of doors (muscle spasms in my calves, usually) I find it pretty effective. Just stop. Wait 2-3 minutes. Move along a bit further. Stop again. I can usually get to car/ taxi rank/bus that way, without collapsing ...which is what I meant by the word “safely”. (Safely was not a good word to use, I now see. because if 'Im getting those muscle spasms, i'm in big trouble; but that big trouble won't hit me until after I get home, so it doesn't directly affect my mobility)

Item 2: I sometimes stop dead in the street for no reason . I'm totally unconscious of doing so, and often equal unconscious of moving on (sometimes I obliviously step out in front of moving traffic, according to numerous witnesses) It's due to what's called an “absence seizure” I've been affected by these all my life. I've no way of knowing how often this happens., but I'm catching myself out increasing often these days.

So, I don't really know if I ever actually walk continuously for any sort of distance. I suspect that I actually don't, but I'm not really aware enough to tell either way. At the end of a road, I can seldom recall my progress along it , and I can't tell if that 's because I was “phased out” , absent, distracted, or merely forgetful? It's all just normal, for me.

I'm supposed to have somebody with me, because I've walked straight out into moving traffic during these absences, but it's seldom possible to arrange that. Either way, it's a complicating factor.

I mant to downplay all that neurological stuff because it's not exactly disabling. I could cope well enough before the physical problems kicked in, but without that background information, my current experience makes no sense. It's increasingly clear that what's happening now is a worsening of the same underlying issue. My system is seizing up, whenever it runs out of juice, whether through activity, low blood sugar or other stressors. It used to be just my brain seizing up, when I was young, but now it's my muscles and other things as well, sometimes very dramatically;

So, I'm having to learn to pace myself, to try to avoid it coming to that. I'm not doing very well ther, because some of those stressors are unavoidable, and because, in general, I just don't know how to look after myself without doing too much.

It looks like nothing so much as congenital metabolic disorder. MS has been ruled out. But I was wary of mentioning that, too, because I don't yet have a definite diagnosis, and probably never shall. It's an extremely long waiting list for assessment and people my age (55) are low priority because it isn't curable, though it is degenerative. My neurologist says that if and when I get that diagnosis, there would still be nothing on on offer but abnti-seizure dugs. I had to stop taking those, because of bad reactions.

Back to the supermarket:

Item 3) Too often (roughly 50% of he time) I 'm finding that I become very ill after arriving home from the Supermarket. That tells me that I'm not actually coping well enough with that distance , bstops or no stops.. Last week is a case in point. I had to cancel yesterday's trip, because I'm still too weak from last week's trip, and I can tell I won;t be able to manage it at all. That's not very unusual.

I do intend to describe those episodes of illness in detail. Just not here and now. My concern is that they leave me pretty much unable to care for myself for several days. I'm also concerned that they fit the description of a “metabolic crisis” (which is a medical emergency) but that's conjecture based on the diagnosis-at-the-end of the rainbow. I'm trying to stick to unequivocal facts.

Item 4: I'm actually taking longer and longer to get around the supermarket. The supermarket isn;t getting any bigger. I keep phasing out, forgetting what I'm there for, etc.

I see, now, that the time taken looks like a measure of how long I can walk about for, so 2 hours looks fantastic. But it's really a measure of how very little distance I can cover in that time (necessary breaks included) It's also a measure of my increasing mental struggle to remain focussed in that situation.

I know I should stop doing those shopping trips, for the sake of my ongoing health; but I fail to find a realistic alternative.

Oh! One last question: I still don't know which descriptor applies. But if I pick e) I suppose they can downgrade it as necessary?

I understand this problem as I have ME/CFS.

Ahh! Yes, mine is similar enough that it was provisionally diagnosed as CFS at one point(and diagnosed as “all in my head” before that) And it really is just the same in effect, it just has added dimensions.

then you not only need to explain your limitations but what would happen if you exceeded them

I think I've done that. But then it's not so much a case of what “would “ happen. I actually do exceed my limitations frequently, which probably confuses the picture.

I know I need to reassess what I “can do” in that light, and not just for the sake of the application form, but in reality. The trouble is, some things really need to be done, whether I “can” or not. So I muddle through. I need groceries, so I shop, and then put up with the predictable consequences. I make rules like: I won't go shopping (nor do anything else much) during the days preceding an important appointment; so that limits the potential damage, in a way (I mean, at least that saves me from missing appointments)

I guess I need to present these things exceedingly carefully. But I'm sure they actually fit OK.

you will be assessed on what you cannot do, not what you choose not to do

Yes, but if I choose not to do something on the basis that it exceeds my limitations, I'm pretty sure that counts as unable to do it? Just the same as if I choose to continue doing it, anyway. I can't pretend that I'm not making choices. I very obviously am, but it's a choice between two evils.

There;s actually very little if anything, I'm “able” to do, going by that “reliability” definition , yet there's no part of it that I can realistically stop doing. I'm always juggling things around, and dropping more balls than I ever care to admit

There's a question: which part of my current activity is exceeding my limitations? You can cut it all sorts of ways.

That was a much easier question, in the past . I just decided that all enjoyable, non-essential things (inasmuch as they involve going out) were exceeding my limitations. But then, I “can't” walk to a bus stop. That is, I can't do it reliably, not by a long chalk. So it really is a case of can't, not won't.

I can't so so easily prioritise what's left. If I do too much in one day, then the last thing I do is the killer, presumably. But it could be anything. It might be getting washed and changing my clothes.It might be preparing a meal. It might be fetching some washing in, dropping half of it in the dirt, and making my usual pig's-ear of folding it. It might be belatedly putting away the groceries that I bought some days previously. So which activity am I “unable to do”?

You would say “getting washed and changed” if you saw how often I drop that ball. But that's a whole lot easier than food preparation., which is something I really struggle with, yet accomplish much more often. It's just that personal hygeine takes much lower priority than feeding myself, unless I'm expecting a visitor.

My point is: there is no definitive answer to that question, it's just clearly all too much in toto. I've consistently gone for prioritisation on the basis of need, not ability. And on that basis, shopping, attending medical appointments, and getting to the post office win the toss over everything but eating and drinking. And they really are the most difficult things, even with help; because I can't just quit half way through and flop out on the sofa, like I do at home when I sense I'm approaching my limits.

Have you considered including a diary as part of your evidence?

Very much. I've tried to keep a diary several times over, but never yet got beyond 3 consecutive days before becoming too ill to keep it up. Of course that part where I become to ill would be the part that best supported my case. So I gave up.

I'm thinking of including one of those fragments and adding a note to this effect? together with some retrospective description? But I tend to lose track of time when I'm ill, don't even know what day it is, half-the -time, so the retrospective part would be very sketchy.

Many thanks again!

julie