Archive for the 'Rant' Category

Warm Front Grant Rant

I re-activated my Warm Front grant in Autumn 2010. It had been on hold while we waited for our landlord to invest in new windows Once he’d started compensating us for heat loss due to drafty windows and it was also apparent that we were staying put for a while ratther than moving, I phoned and re-activated my application to get free insulation work done on the house.

After I was re-assessed (or rather the house was) they can to the same conclusions as last time – loft insulation top up, cavity wall insulation, new jacket for water tank – but with the addition of cutting a new loft hatch in part of the house where to assessor thought wasn’t accesible from the main loft space.  Although he didn’t actually go into the loft as his ladders weren’t long enough (not very professional although he was very friendly and informative about the process).

I’ve been waiting around 4 months (maybe longer I forget the dates) to get an installer assigned to do the work. Today I got a letter from my newly assigned installer telling me they’ll come “to assess and where possible complete this installation” on 30th March 2011.  Except the letter also states that work must be completed by 27th March for me to qualify for the work. Huh? **update below

I phoned Warm Front, who are less friendly than they used to, to ask what that 27th March date meant.  Was it a deadline for the installer or some kind of deadline (previously unknown) to my grant eligibility?  I was told that all work for current outstanding applications must be completed by end of March or else the money would be gone.  If I couldn’t get the work completed by end of March I would have to re-apply when (if?) they re-open for applications sometime (unconfirmed) after April 2011. There’s some talk that the criteria will change next time so I don’t even know if I would qualify next time around.

It’s rather unsatisfactory to have enquired about progress of the work in January to be told it was awaiting assignment and there was a backlog then to discover a time limit for the work which they never informed me of.  Even their web site is woolly about it. It says applications are not being accepted and that,

“All existing applications to Warm Front will be honoured and, as far as possible, works will be completed by the end of March 2011.”

But it doesn’t state that if the work isn’t completed that’s the end of your grant and window of opportunity.  Being up front would have helped me not have to ring them up and get the advisor who must be sick of telling people the same thing and fielding complaints about not having work allocated and running out of time.

Something that really irritated me about the process though is my letter tells me to “please ensure that loft spaces are clear of personal belongings, debris and any boarding prior to our arrival”.  I’m presuming like so many things now if it isn’t clear they won’t install in that part of the loft.  But I’m getting this help because I qualify on the basis that I can’t take care of myself – I can’t bathe myself or go out of the house on my own let alone go up in the loft or shunt things around!

These Government assistance schemes don’t really go as far as they need to or join up the thinking. I got a letter last week about getting subsidised assistance to switch my tv to digital and am tempted to get a freesat box as they will install the dish and box for a very reasonable amount.  But what the scheme doesn’t do is tell you if you need, or help you to get if needed, planning permission for the dish.  They think if I struggle to negotiate switching my tv to digital that I’ll be perfectly fine applying for planning permission?  Hmmm.

As for the insulation work I’m going to have to ask Growler to ring them and see a) if the work is carried out on 30th March when the letter says it must be done by 27th if we’ll get a bill for the work and b) if they could come earlier because if they assess and can’t do it on the 30th March it won’t get done at all.  My ME/CFS brain can’t cope with that conversation plus he’ll know days he might be able to make himself available as they want to arrive between 8-9am and take 4 hours to do the work and they need access inside and out.   So a bit much for me on my own.

I imagine there’s going to be a lot of people who have been waiting a long time for they’re heating and insulation work (heating particularly was being quoted a long waiting list) and who are going to be furious to discover their grant has been cancelled because the scheme couldn’t get the work scheduled in time.  And Warm Front must be pretty unhappy that their budget got squeezed so much they had to stop accepting applications and ended up in this situation stuck between installers who want to get cash and clients who want to get warm homes.

I just hope my home gets to have the insulation work done in time.

 

**UPDATE: So hubbie spoke to the installer and the 27th March was a typo on the letter. Phew! Also she says there is a bit of wiggle room to get work done. Double phew!

Measuring By Your Own Experience

I remember learning that most people tend to react to situations by measuring them from their own experience.  That is, you apply what you’ve experienced yourself to the matter in hand.

I have tried really hard from that day forward to not limit my understanding to my own experiences and I am the richer for it.  But it’s terribly difficult not to do it because often we can only call on what we know to make sense of things. Often we want to be able to help, to offer kind words and it’s easiest to do that from what we already know.

It’s much easier to say what some of the little that you know than to say ‘I don’t know about this but I’ll come on the journey with you’.  Much easier than to admit to ourselves that we don’t know all that much in the grand scheme of things.

Especially so because often our contact with people and situations is casual, or we aren’t able to invest that much in it so and we don’t want to have a silence  – so we fill it with advice or the knowledge we have ourselves.

What this post is really about is the plumber.  A very nice, very talkative man.

He came to give us a quote on some little but urgent jobs and on his way out was asking what we did.  He vaguely remembered from last time (wrongly) that I was a student.  So I was brave and said no I was sick and didn’t work.  Was I signed off?  No I’d not worked for 4 years from being sick – I have M.E.  “Oh never!” says the plumber, “My wife had that”.

My heart always sinks when people say “had that” in the past tense.  The first was a hairdresser who said they had it for a couple of months.  Groan.  It usually indicates people who’ve had an illness that doesn’t seem to sound much like what I have wrong with me.

To be fair to the plumber he was really, super nice about it all.  Told me his wife had it when she was a teenager back when people laughed at you for having it.  Told me she had to take time out and go back to do her education over a series of years.  Told me they have 2 young children and she’s a lot better now.  Told me she still gets tired and gets monster migraines from the M.E.  Told me he’d pass on that I have it and that I can call her anytime to chat about it if I want to talk to someone who knows all about it.

He also told me I’ll get better.  In fact he told me I can’t get any worse – I can only get better.  “Honestly”, he said.

“Ummm.  Yer … but … I have actually just relasped a bit …”

“Ah” he says “do you get it where you’re fine for a bit and then you’re in bed for a week?” he nods to encourage my yes.

Actually this is the kind of ME that mystifies me.  This periods of ok, periods of very ill is an alien concept to me.  I expected in the early days that this is what my illness would like if it persisted.  Maybe I’d get a lot better and then crash for a week, pick myself up and get back to it.

When that patch of “ok” didn’t come I thought perhaps I was just on a wider arc than most. Perhaps I was in a crash for a year and soon I’d be ok for a year, then maybe crash a bit and get better – but on a longer timescale.

Nope.  I’ve been “on a consistent level of crap” (as I said to the plumber) for nearly 3 years.  I improved very, very slightly over that time it’s true – but nothing to write to the DLA people about.  Not enough to go to the corner shop on my own, let alone get a job or have much of a normal life.

So the plumber telling me I can only get better, I can’t get worse has made me pretty upset.  With myself.  For not being successful at recovering, for not ‘only getting better’.  For failing.

Him telling me the key was a positive outlook didn’t exactly cheer me either.  I know I’m a bit sad and down at the moment but I do have a pretty positive outlook generally and indeed even at the moment despite being utterly fed up in the face of a set back with my illness.  All these years I have focused on the can do not the can’t.  I’ve laughed nearly every day.  I sought out joy.

My rational, logical brain knows this conversation is nothing to get upset over.  I know for a fact that I can get worse and get worse very easily just by pushing beyond my physical limits. 

Maybe his words of wisdom took that knowledge as a given or maybe his wife’s experience of ME is different to mine.  But I know, from my own experience, that I can be more ill than I am.  I also know that a positive outlook is very important because it’s a lot easier to be this ill with a positive attitude than with a negative one – mainly because I’d probably do myself in if I had a negative attitude.

I also note that he was insistent that something (relevant to UK tenancies) was law when I know it is not.  I told him I thought he was wrong and he said no, definately it’s the law.  So I double checked a couple of sources and I’m right.  So let’s just say as well as being nice and talkative he’s also pretty sure he’s right about everything.

Plus the plumber was only reacting to my revealing I have M.E. from his own experience, as most of us do.  He measured my illness, my life, my ability to recover – from what he’s been through with his wife.  And in turn I measure this myself largely by my own experience – although there are large doses of others experiences mixed in here too.

He told me I want to get to see some proper experts.  Sigh. I wonder still who those might be.  A referral to a specialist will get me CBT and GET and maybe pacing and lifestyle management classes.  I continue to resist these because I’ve kind of been through all of that in the first year or two on my own and I’m certain they will be counter productive.  Which in itself makes me question myself yet again. I resist the professional NHS help because I want to keep myself ill?  But I know I resist it because I don’t trust those delivering the therapy to keep me well or to not risk the little ability and function I do have.

The plumber was being kind.  He was being encouraging.  It’s just that it didn’t quite have that effect on me because my experience and knowledge are different.  Can I be angry with him for that?  Actually I’m upset (or is it angry?) for the unsolicited advice and pep talk. 

But also I remind myself that without people sharing I wouldn’t have access to the tools that have helped me with ME – that includes loose pacing, D-Ribose and LDN.   So what do I do with the hurt and the upset and the anger?

I guess I can blame the ME for making my reactions, my emotions a bit too senstive and unchecked due to this flare.  And remind myself when I am in the plumbers shoes to try and not just measure it by my own experience but to try and look outside of what I know (because I always learn and it always helps).

Not forgetting that sometimes listening and saying “I don’t know what to say” is very valuable too.

Image by knickertwists

Not Totally Re-Assured

The ME Association have new advice on Swine Flu

http://www.meassociation.org.uk/content/view/925/161/

1  Are people with ME/CFS more at risk of catching swine flu?
 
Overall, the answer is probably no.  However, if you belong to a sub-group who easily pick up infections, especially coughs, colds and flu-like infections, then the risk of catching swine flu may well be slightly higher than for normal healthy people.

They are saying that generally people with ME/CFS  are not at increased risk of catching swine flu or having complications from it unless you have other underlying health problems (like asthma) or are severely affected or bedbound.

I’m not totally re-assured having had a minor viral infection in the past cause a chest infection which lasted for 2 months when my husband and brother got over the same bug in a week.

But they say:

“Although a variety of immune system abnormalities can occur in ME/CFS, they are not usually consistent with the sort of immune system deficiency that makes people much more susceptible to this type of infection.”

I’m trying to be more relaxed about it. But when a common cold can rob me of a couple of months it’s difficult not to be a bit worried about what effect swine flu might have.

I would just like the ME Association to place more emphasis on the risks for that sub-group who easily pick up infections, for those severely affected, for those bed-bound and for those for whom infection worsens their condition.  Because if a group like them don’t highlight the risk factors for these people to health professionals, then who will?

If I get swine flu will the nurse on the phoneline take any notice of my past experience with virus and colds lasting for months and affecting me badly? Or will they just say that as I don’t have asthma I’ll be fine?

I guess a lot of people think I am a bit paranoid worrying about this.  But when this virus could set me back for months, when I might face a sudden and significant debilitation, it’s kind of worrying.

Not NICE For ME

Unfortunately the legal challenge over the UK NICE Clinical Guidelines for ME/CFS has been ruled in favour of NICE.

http://www.meassociation.org.uk/content/view/814/161/

I am deeply profoundly saddened by the news.

I suspect it’s a victory for NICE based on technicalities and legal smoke and mirrors.

If they they indeed did follow their own procedures rigidly to produce these guidelines, which are unfit for purpose, it just proves that their processes are flawed. 

That they can disregard medical expertise and biomedical research, but be so swayed by a small but powerful number of CBT and pyschiatric focused lobby is an absolute disgrace.

These guidelines offer 2 “treatments” which are management or coping strategies at best.  They seriously undermine GP and Consultants ability to work with patients to find the best management and treatments for their needs.  They muzzle their ability to explore ME/CFS and to treat patients with drugs and therapies that can be useful.  These guidelines at best needlessly restrict the quality of life of ME/CFS patients can expect and at worst push them into “treatments” that will worsen their health to alarming levels.

It sends the wrong signal to doctors, patients, media and every ordinary person (some of whom will one day be diagnosed with this illness and face the same obstacles as us).  And this signal will travel around the world.

I can only cling to hope.

You might be interested in:

Even Action for ME who support the NICE Guidelines have voiced concerns about the treatment recommendations and the NICE response to the judgement

Changes

I had my two remaining wisdom teeth out this last week. The procedure went well and I was with it after the sedation within an hour.  But it’s left me feeling a bit out of sorts.  It’s hard to put my finger on. 

I am experiencing dizziness again quite a lot ever since the sedation.  Whilst I’ve had dizziness before it hasn’t been a huge day to day symptom this last month or more. So either the sedation, or the “trauma” of the teeth being removed has made me very fatigued, or the sedation itself has had some kind of long lasting effect on my system.

But it’s more than dizziness.  It’s an almost bereft feeling.  Very odd considering how keen I have been to get these teeth out of my mouth for the last year.  But I think that feeling if passing.

Of course it’s also been a mask to hide behind and to stop me thinking about the major change happening in my life as from tomorrow.

Growler has a new job, in an office, 9am-5pm, 5 days a week.  It’s good news.  He’s excited about the job itself, it’s a year contract of good, steady money and security in times where a lot of companies are wobbling over budgets and freelancers are having to work extra hard to secure work.  The organisation has their office locally, in our city, just 15 minutes walk from our house.  It’s ideal and it’s a job he’s really looking forward to doing.  I think the work, the security and the structure will be really good for him.  I’m so proud of him and so excited for him.

The excitement is mixed with some trepidation about how my own 9-5 is going to work out.

I’ve spoken before about the fine balancing act of positivity/hope and practical/realism.  I’ve had 2 family members being super positive and suggesting the structure might be good for me too.  That it might give me the incentive I need.  Growler says this is out of well wishing and positiveness on their parts but I can’t help but feeling a sting that anyone should think what I need is motivation.  That if I am forced to get up and make my own lunch that will help me to get better.  This just suggest they don’t really understand the reality of my illness.  But I shan’t dwell on that for now because I am trying to think positive too in the face of major changes to my life and care.

My fear for myself and spending the majority of the day for the majority of the week alone and without practical support is only matched by my fear of how Growler is going to manage balancing a full time job with caring and looking after the house.  It’s unknown territory for both of us.  I get the sense from my parents and his that their most worried about him, but that might be because no-one wants to press me on how I am going to cope.

So my breadwinner is off to win regular bread and together we’ll muddle through a new way of living with ME/CFS. I am incredibly fortunate not only to have a supportive breadwinner but to have had the luxury of having him here, on hand nearly every day for over a year and a half.  I love hanging out with Growler.  Having him around every day has been a joy and helped normalise my world within these 4 walls of the house.  I have to think of this as a foundation for what lies ahead and try not to dwell on the upset of losing it.

It might mean I blog more.  Being alone a lot of the time.  It’s certainly going to present me challenges both in my day to day living tasks and in my marriage.  What I want is to be the supportive spouse and send Growler off to his new employer with no worries except focusing on a new job.  But I can’t seem to set aside my own overwhelming sense of fear and loss of what the future holds.  Of being scared that all the tiny extra’s of effort, all the things I forget when left to my own devices (how much is too much, when to drink, when to eat, how to keep perspective) will gradually wear my health away and leave me useless. Leave me being more a burden.  Yet the fear and the worry is self feeding – because worrying about it makes me feel ill! 

I can see how from the outside this could all seem like low self esteem, depression maybe, being dependent on my husband for every little thing.  That now with the “incentive” it will make me better.  But truth is I AM dependent on my husband for a lot of things.  That doesn’t mean it’s wrong, or bad for my self esteem, it means I am chronically and severely ill.  I don’t rely on my husband to make me cups of herbal tea and bring them to me in bed because I can, because I am lazy, because I choose not to do it myself.  It’s because to make the tea myself means a whole complex set of weighing up of efforts over reward that usually means no herbal tea for me.  Because it’s not just about a teabag in a cup – it’s about moving out of bed, moving dowstairs to the kitchen .. the stairs being a huge effort this is minimised to once up, once down a day if possible so the move to make a cup of tea means first getting dressed, getting washed perhaps, gathering what I need with me (medication, phone and so on), resting inbetween these things, resting once down stairs, then maybe thinking about how to get water in the kettle … and so on.

If it were as simple as relying on my husband just because I can – I can promise you I’d be choosing to make my own tea.

So it seems a part of the pain and fear is the perception of the outside world.  Perception that I am more capable than I show – do I have to make myself more ill to prove to them I’m not?  Perception that with the right kind of motivation I’ll find I can do more – will they recognise the things I have to not do in order to do the essentials myself?  And really what they THINK doesn’t really matter.  All that matters is living my life the best way I can.  Finding the compromises that work the best for me, for me and my husband.  Finding ways to be happy and to not wreck what level of function I do have. Finding ways to keep my sanity, my perspective, my sense of self.  And trying to balance self care with not making myself worse.  Balancing my own happiness with my husbands.  Trying to balance security and regular income and my husbands job satisfaction with the challenges of being a person with ME on their own 8 hours a day, 5 days a week.  Trying to drag myself away from the fear and to get on with the living.

My head is stuffed full of things – but there doesn’t seem to be much sense coming out.  I’m not sure I wrote the blog post I wanted to, because now even I’m confused about what I want to say.  But that’s part of what I’m saying.  I’m a mixed up with thoughts and mixed up because ME makes my thinking cluttered and fuzzy and whizz around in a circle even once a conclusion has been reached.  I expect more rambling blog posts will follow.

Feeling Totally Useless

My mum has severe tonsillitis. She lives on her own. And because my immune system is screwed up thanks to ME/CFS I can’t go and see her. I can’t run over there and help. I don’t even have the energy to go and make her a cup of tea, heat some soup or fetch a prescription.  This is not how life was supposed to be.

Yesterday my dad took me out for an hour. I asked to go to a nature reserve nearby. He pushed me around the lake/pool in my wheelchair and even though his pace was fast I could hear a slight wheeze in his breathing.  We passed a couple about the same age as him with a pushchair containing a small child – I presume their grandchild. I hung my head in shame. My dad shouldn’t be psuhing his 35 year old daughter around on a sunny autumn afternoon – he should be feeding the ducks with his grandchild.  A grandchild that does not exist and may never exist is ME/CFS continues to beat me.

I tried hard to get to a point where I was earning enough in my job to have a comfortable life (ie. not having to scrape by every month) and where I could save and one day know that I could support my parents if they needed it.  That as they got older I could offer them a little help if they were in a tight spot.  Now the only income I have is from a small government assistance meant to help me with my care and mobility needs. I can’t work. I don’t earn.

Whenever my mom had a problem around the house if I could help fix it I would be the first there. My brother isn’t the practical kind and my eldest brother is absent 364 days of the year on average.  I would be the one to decorate, move furniture, fix a fuse, strip carpet out – get stuck in and get the job done.  I’d be the one to take the afternoon off work as holiday and drive 30 miles to take my mom to a hospital appointment.  Now I’m struggling to get myself downstairs to my own sofa.

Postscript: Growler says it’s good to focus on what I do have. A dad who can take me out and spend time with me, a mom who is able to live alone and a brother who is as we speak over there visiting her and taking supplies. To focus on the positives.  I’m trying to do so. 

It’s like being hit hard all over again by that grieving for who I was, what I had and what lay ahead.  Grieving for a future that hadn’t happened and being struck by one that now might and how different they look.  That life isn’t turning out how I’d wanted – and we’re not talking fancy cars and houses, we’re talking simple basics of ability and function.

I can’t say I’m able to wrap up the grief and the pain easily.  But as ever, with a supportive partner and family and friends, I can try to shift my focus slowly around to be thankful and positive, not dwelling on the fears and the grief.

Sick of Not Being Able

The Bad Stuff:

I am so sick of the rubbish parts of my life.  Of not being able.  Full stop.

Sick of feeling crappy.  Sick of feeling exhausted.  Sick of every day looking the same.  Sick of not knowing why.  Sick of how a little virus can knock me down so hard.  Sick of these four walls.  Sick of not having physical ability to fulfill my needs let alone my wants. Sick of having to plan but not being able to plan fully.

I don’t think I’ve washed for 5 days … but I can’t really remember.  I’ve spent 2 of those 5 days in bed all day – morning, noon and night.  Prior to that I’d only spent 2 or 3 days in bed all day in the last year.

I lost most of summer 2007 to a virus which turned into a chest infection and took me 3 months to recover from.  I lost all of January 2008 to another virus affecting my sinuses and throat.  I was better for all of 5 days (and by better I mean back to dealing with “just” crappy CFS/ME) before I got hit by another virus, or a flare up of the same.

Argh!

I miss the outdoors.  I miss the world.  I miss my friends.  I miss being able to be a proper daughter, a proper partner.  I miss being spontaneous.  I miss being able to work out this kind of frustration by engaging in physical activity.

The Bright Side:

Being frustrated, angry, upset about something isn’t going to stop it from happening.  It isn’t going to bring a solution.  It doesn’t change that I am ill.

It’s important for me to remember that I am ill and it’s CFS/ME that brings the limitations.  It’s not lack of wanting, motivation or being weak.  If anything I am strong not weak.

Anyone who is used to leading an active life and who has to be housebound for everything except doctors appointment (and being ferried to respite gofers) is going to feel a bit whacky and out of sorts. 

It’s not like I have this terrible life and I am in fact pretty content in my life such as it has to be.  I have seen family and friends these past 4 months and enjoyed their company.  Indeed in autumn/winter 2007 I was starting to do a bit more and get out and about.  Many of my symptoms are fairly stable when there isn’t a virus aorund to cock things up – so it’s much easier to navigate life and avoid very nasty episodes. December was an exercise in pacing and restraint for enjoying Christmas festivities – which I did very much.  There were small improvements.

It’s just hard sometimes to keep the good stuff and let go of the bad stuff. 

I know I can do it.  I know I am very fortunate in so many ways.  

I give thanks for the life I have. 

But it would be good to have a great life where I also get to be more able please …


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