Archive for the 'life' 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!

Advertisements

Back and Forth

When I was formally diagnosed with ME in January 2007 the printed information sheet my GP gave me said that ‘most people make a recovery within 4 years and those who don’t will probably be ill for the rest of their lives’.  It haunted me then and it haunts me now despite this idea being largely discredited since.

Four years seemed an impossible amount of time to contemplate being ill for. The six months I had previously been signed off work sick for felt like an incredible period to be ill for. I had heard the theory of ‘4 years’ while I was off sick but before a diagnosis had been made and just before I married I asked my husband if he really wanted to go ahead in the knowledge that this might, possibly, just persist for a while.  What if I *am* ill for four years, I asked.  I don’t think either of could comprehend it but it scared me silly.

Having first seen a doctor to report symptoms more than 18 months before my diagnosis once it was confirmed the taunt of ‘4 years or bust’ made me determined I was going to beat this illness.  I wasn’t going to let it win, let it rob me of anything more.  After all 4 years was a long time in which to get well and I wouldn’t feel this ill for all of that time because I would improve. Linear progression like everything else in life, no? Well actually, no.

Now here I am 4 years past my formal diagnosis having had symptoms for 5-6 years. It’s frightening to say it so plainly.

Pretty much everyone who is informed doesn’t say “most people recover in 4 years” anymore because it’s not been proven to be true.  But it still hangs over me because once it was a milestone. That one day I would be able to think back and laugh at the idea of worrying whether it would take 4 years to get me back to health.

In truth I made a small recovery after the big crash of December 2006 (after a disasterous phased return to work), a further small recovery when I started on D-ribose and had medication for pain control and then a further small recovery when I started LDN in December 2009.  But I’m still not close to being back to the level I was at before the big crash despite that in itself being pretty poorly. I still long to that level of ill because compared to now it would be such a relief.  I could drive, I could do physical things for short periods, I could do stuff – even if it left me exhausted and needing to rest.  Now it’s mainly rest without the doing.

It’s no wonder I’ve been feeling kind of down this month.  Combined with recovering from Christmas and festive exertions January is again a bust this year.  And my great hope of LDN, despite it giving me some improvement, a year on hasn’t given me as much as I had dared to hope it might.

Growler’s job is being made redundant in July and as the organisation winds down it’s stressful place to be let alone with the added pressure of finding a new job that is a) something he wants to do, b) pays well enough to support us both, c) hopefully is within easy commute so we can stay put and I can keep my supportive GP and d) with a bit of luck offers some flexibility for when I need extra care or if my condition were to worsen.

Lump into the equation that the British government is sharpening the knives for the disability payment I recieve along with not being well enough to make much of a meaningful income on my own and it all gets a bit too much.  I just seem to be waiting for life to start again and as the lives of family and friends along with the big wide world marches on with me sat on the sofa only able to watch.

I did find reading one of my favourite articles about coping with chronic illness a comfort.

We all have periods when we feel overmatched and not up to the struggle. But as long as we pay attention to the struggle, we will get through the day. We flounder when we set unrealistic standards, or cannot grieve for what has been lost, or cannot start each day afresh. Depression can be tackled despite the physical complications that try to drag us down.

In some moments I think depression is coming back to get me again but I’m pretty sure it’s just sadness, loss, grief, frustration, stress and anxiety about what the future holds.

Revisiting the site my GP used for the information sheet 4 years ago, which has been updated, has helped a little.  Now it reflects the vague complexities of what I am wrestling with in terms of prognosis.

What is the outlook (prognosis)?

In most cases, the condition has a fluctuating course. There may be times when symptoms are not too bad, and times when symptoms flare up and become worse (a setback). The long-term outlook is variable:

  • Most people with CFS/ME will show some improvement over time, especially with treatment. Some people recover in less than two years, while others remain ill for many years. However, health and functioning rarely return completely to previous levels.

 

  • Some people will continue to have symptoms or have relapses of their symptoms.

In some cases, the condition is severe and/or persists for many years. Those who have been affected for several years seem less likely to recover.

Improvement with treatment? Which they say is managing your sleep, managing rest, relaxation and diet? That improvement plateaued some years back for me. At least the “4 years or bust” has gone from their advice now.

But I feel a failure for still being ill after all this time.  I feel powerless because the only change I can effect on my health is acceptance and working to minimise flaring symptoms. That’s not recovery from illness as most see it conventionally. That’s surviving, that’s living as best as one can. That’s sucking it up and dealing with it.

I don’t quite feel hopeless, not wholly hopeless, no.  Hope is still one thing I do have.  Hope that things will change, that I will get better, that I am not to be lost in this mire of ME for the rest of my life.  Yet I believe that ME is something you have for a larger or lesser degree forever.  How do I reconcile these opposites?  Hope that I don’t really have ME – that it’s psychosomatic or an adrenal problem or a chemical inbalance and that all this grief and loss has been the cost of an oversight?

I don’t really know where I go from here other than to put one front in front of the other and keep going.  I don’t have any new plans of attack.  The only things left are desperate miracle cures and taking a year out from everything (everything that keeps me balanced and sane and happy) to try and do things differently but without knowing what might work.  That or winning the lottery and paying a doctor vast sums to tinker with my engine until I work again.

Most of the time I am coping and content in the small limited world I am able to inhabit thanks to a lot of buffering by my wonderful husband.  I do appreciate the small improvements since 2007 and have no wish to go back to that level of disfunction.  I’m just sick and tired of ME is all.

Up Up and Away

Up – My LDN Dose

I upped my LDN nightly dose last week from 2ml to 2.5ml. I tell you it’s such a teeny tiny amount of liquid but boy my body had something to say about it.  The side effects I had from the LDN only lasted a few days and I think were compounded by me starting to actively eat wheat again and being busy the previous week.

On the 2nd night  of my increase (Wednesday) I was woken around 3.30am with strong nausea, a real churning stomach.  I felt pretty delicate and a little sleep deprived the next day.  The nausea wore off by midday but once I did some small exertions back it came albeit mildly.  By late afternoon I was having acid indigestion (not something I normally have) and that night I was woken by strong nausea again around 3.30am.  After sitting up for a couple of hours and with the help of my faithful friend Resolve I got back to sleep at 5.30am and slept through until 10.30am.  I really needed the sleep!

During Thursday the nausea was hanging around – mild but a lot stronger than the previous 2 days.  Acid indigestion came again that afternoon and I was really uncomfortable by the time I went to bed.  I tried Eno but it didn’t help and then had to wait to take a Resolve which finally settled my stomach enough to get to sleep by 1.30am.

I slept in a little later on Friday and the nausea was pretty much gone and no acid indigestion.  There was a little after eating my evening meal and then when I had to move to go to bed but not too bad.  However my energy reserves that day were really low.  I really felt the fatigue hit with even small exertions aside from the essentials. 

By Sunday the nausea was totally gone, my sleep was back to being deep and sound as it has been prevuiosuly with LDN and energy reserves had picked up slightly.  Today (Monday) a week later and the energy reserves have improved a little and I feel I am on the up.

Up – Pottering About

Despite the 4-6 days of side effects from upping my LDN last week I did manage to water my plants and seedlings every day where needed.  I planted some red sunflower seeds too and ordered more pots & compost to pot up my peas I got from the garden centre.

I managed to do a bit of sitting in the garden when the weather was warm and was joined by my cat Flyman.  I even finished reading the first book in the True Blood series and I’m onto book 2.

Today I’ve put my nose to the grind stone to try and get work finished up on the web site illustrations for my current client.  I’ve done a finished drawing & am waiting to hear from the client to see if it needs any changes.

There’s a plumber coming this afternoon to look at out leaking toilet and radiator which need some urgent attention.

I have to get my pea seedlings into pots this week and hopefully get some flowers from the garden centre to attract hoverflies to combat the blackfly problem developing on my beans (and soon my peas I expect).  As a beginner I have to say this gardening stuff is complicated and can be expensive.  It would be much cheaper to buy the veg.  But it is amazing to see it growing and nuture it.  Sadly my outside tomato appears to have blight.  I’m not going to use antifungals – too toxic.  So if it is blight it’s a goner.  I expect my indoor tomato will fall foul of it too.

Meanwhile I need to decide whether to ask my sis-in-law-2b to water my plants once next week or ask my neighbour to do them a few times as well as feed the cat while we are …

Away – on holiday next week!

Me and Paul are taking a 10 day break up to North East England.  Ten days because we’ll take a day and overnight to get up to our self catering cottage in Northumberland – then stop off to see Ashy on the way back down country and then another overnight/day to come home.  It’s a bit too far for me to mnage the journey in one go.  But the pacing of the journey adds to the fun.  Like a mini road trip.

Once at out self catering cottage we’ll be 3 minutes from the beach by foot or wheelchair.  I did have lots of plans but I’ve scaled it back so now the pressure is off and we’ll be having a week by the coast to explore and laze.  To unplug from the internet! Well most of the time 😉

I do find myself worrying about the cat a little.  He can be so clingy and moans so much.  But our neighbours are fab and Mrs Next Door loves Flyman so I expect he’ll get some quality fusses and kisses.  Also they can hear when he is wailing in the garden and we’ll make sure they know it’s usually because he’s hungry (he’s always hungry!).

But yes a week by the seaside with the beautiful Northumberland coastline will be wonderful.  As will getting to hang out with Paul for a whole 10 days plus.  I miss him now he’s out working at an office full time.  And it will do him good to unwind a little.

Her’es hoping that 2.5ml of LDN will be giving me an extra boost by next week too 🙂

Plodding Along

Yep folks I’m plodding along.  Generally OK but still adjusting to the extra energy LDN is giving me which is giving a slight boom and bust on a day to day level.  But it’s not a crazy wild amount of energy or boom/bust.

I’m at the point where I’m saying that LDN is helping me.  It’s definately doing something, something positive.  Whether the improvement picks up I don’t know.  Whether I’m getting better but weakened from years of debility and need to gradually build up my strength I don’t know either.

But I do notice a change for the better overall.

It’s May and so I’ll be (hopefully) kept busy with bloggers doing posts for ME/CFS Awareness and keeping the http://meaware.wordpress.com blog and Facebook pages up to date.

Also the Creative for a Second journal will be with me soon.  Growler’s birthday is coming up (a visit to Wales and the inlaws is due).  Plus I still have some web artwork to finish for my client and 3 commissioned paintings in the pipeline. 

I’m getting swept up in the UK election and desperately wanting a change in British politics – although I’m phsyically anxious at the idea of a Conservative majority.  I’m hoping to stop up most of the night next Thursday to watch the results coming in.

Combined with a visit to the inlaws next weekend means I might be a bit of mess for ME/CFS International Awareness Day on the 12th May!

But that’s ME/CFS – it doesn’t stop just because there’s stuff you want or need to do.  So that might be my garbled message to tell the world.

LDN might be helping but it’s not a miracle drug for me.  No overnight remission for this gal.  If you want more detail about my LDN experience I’m keeping a weekly diary at Patients Like Me  but I’m only sharing it with members at the moment rather than have the whole world be able to see it.  If you sign up let me know and I’ll give you my username.

I will continue to report back here about my LDN use too.

In other news a sign of my improved energy reserves is I’ve started falling in love with baking.  Initially in an attempt to make treats that I could eat safely with my IBS but now also because baking something to give to others is so satisfying!  I’ve made 3 batches of biscuits, a vegan cake, 2 batches of scones and 2 lots of marshmallow crispies in the last month.  I just took delivery of a bun/tart tin so hoping to try wheat free pastry tarts next time I have the energy to do something.  Also maybe fairy cakes.

Baking and politics have been somewhat of a distraction from art.  But I’m starting to feel like the art groove is returning.  Just in time for the Creative for a Second journal and ME/CFS Awareness blogging arriving! Phew!  Maybe I will find something arty to contribute about ME/CFS this month after all.

Needing Adjustment

So I am weary today.  I felt a bit weary yesterday but had a commitment to write a letter and make a pop up so I would be clear today to do sorting with my sis-in-law-to-be (K) today.  By the end of yesterday afternoon I was wishing I’d spent the day sleeping, or at least parked on the sofa watching telly.

Well today I feel (unsurprisingly after pushing a bit yesterday) even more weary.  So I’m just texting K to cancel now.  I’m not a zombie but I’m not up to wrestling with the contents of kitchen cupboards or the grotty assortment of stuff in the garage. 

In terms of pulling out clutter for car booting we are nearly finished – just kitchen and garage to pull stuff out from.  There’s more stuff for recycling and tidying after that but we should be able to organise a car boot session soon – if I still have willing volunteers!  But all that has to wait for another day.  As Growler said, resting is The Most Important Thing to do after my weekend.

I felt myself thinking I was premature in my excitement over LDN and what improvement it might be offering.  That writing a post admitting I was wiped would be showing just a classic boom and bust. 

I hope it doesn’t read like that and as someone who hasn’t experience a boom for a long time I’m fairly confident still that LDN is making some kind of positive difference.  What I need in the coming weeks is to make an adjustment to utilise the positive improvement without overdoing it.  Plus my long weekend away was a calculated bust.  If LDN meant I didn’t crash that was a bonus, but I was expecting this week to be a bit of a write off from all the extra exertion at the weekend.

The beginning of the week felt like normal levels of ill.  I maybe should have rested more yesterday and the day before than I did.  But I can learn that lesson for next time.

I forgot to tell you that my GP said if I did ever feel I wanted to try the GET to just let her know but it was totally up to me.  Having had a taste of my local physio’s GET (when I didn’t know that’s what she was asking me to do and when I didn’t know I had ME/CFS but every health professional seemed to kn0w) I think I’m better placed to understand how to increase my own activity in a controlled and paced fashion. 

I already aims, ideas and tools to use – I just haven’t had the physical health to do anything with them.  I’d like to start doing the basic pilates exercises which the physio said were OK with my back condition.  I’d like to start gently increasing what I do each day and get back to taking really short walks.  It’s not the willingness that’s missing – it’s the ability.  And I have to walk before I can run. I have to be a bit better before I can walk.

In other news – I really, really, really want to hear about my DLA. 

They wrote to me at the beginning of January apologising for not having made a decision and I am still waiting to hear.  Trying to stay positive but the suspense is killing me not to mention the lack of any money since October has been stretching my tiny income from my art sales.  Plus it’s hard not to imagine that the delay is because it’s not straightforward and I’m going to need to have a medical or am going to be declined.  Must, think, positive!  Now is not the day to worry about it. (But I still want to know!).

Fireworks Fizzle

Wouldn’t it be lovely, I thought, to go to a bonfire this week and see a fireworks display? (Bonfire Night, Guy Fawkes and all that).

Then I remembered 4 or 5 days have passed when I haven’t felt up to having an assisted bath.  How am I going to be up to going out, in the cold, surrounded by lots of people and noise and stimulation, when I can’t even manage to plonk myself in a bath and be washed?

I suppose it’s because fireworks are something I can watch and enjoy, passively, along with my husband and others.  I want to be bundled up, wheeled out and shown something outside of the everyday.

But also I’ve been feeling this week like I just want one day, or even half a day, where I just get to be normal. Or pretend to be normal.

I’m wishing to go out for a meal, or just eating anything I want to just for one day.  Can I just have normal stomach and bowels for one day please.

I found myself daydreaming this week about what I would do if I was 100% recovered right now.  I saw myself doing so many things and the more I did the more I wanted to do.  Drive to my mom’s and do all those jobs that need doing, drive to my dad’s and help him lay that terrace and do all that DIY he can’t do right now, spoil my husband, clean my house from top to bottom, look for a job, catch up with friends and family, paint and sculpt all day long, make love.

No wonder my mind is whizzing with a hundred different thoughts yet I lack the oomph to make any sense of anything.

Do I cope well living with ME/CFS? Maybe.  Do a thousand things never happen and everyone just has to live with that? Yes.

Head Full of Rocks Wrapped in Candy Floss

My head feels a bit like it’s full of rocks wrapped in candy floss.  Not quite so sticky in there today but my brain is all over the place. 

I threw a cup of peppermint tea over my shoulder this morning in bed and it went all down my back and all over the bed/wall.  Involuntary movement that seemed quite deliberate by some broken bit of my brain.  The circuits are a bit overloaded.

Dear friends, this post on my husband’s blog will give a hint as to why my head is a mess http://bit.ly/8BXVH

Sorry this isn’t the jolly post about what a lovely time I had for my birthday last week with cool pressies and a fab short break in North Wales.  I’ll try to get to that if I can focus beyond the fog for long enough.


Fundraising


Push It 11 Sep 2011

for ME Research

CFS Links & Resources

See my entire list of CFS/ME/CFIDS links to sites, articles and resources via del.io.us
http://del.icio.us/rachelcreative/M.E.
New stuff is added all the time.
Advertisements