I’m BADD

Blogging Against Disablism Day

Yup, that’s right, I’m Blogging Against Disablism (to)Day.  I haven’t blogged in a long time.  Actually, it’s been over a year since I did so.  Knowing it’s BADD today got me thinking though.  I’ve been through quite a journey over the past 17 years, and one that’s given me a lot of twists and turns in the past year.

It’s never been any secret on this blog that I have been dealing with chronic illness leading to disability.  This time last year it was a diagnosis of ME with severe food and chemical allergies I’d been living with – I’d had the ME diagnosis for over a decade.  A year on the diagnosis is now Chronic Epstein-Barr Virus Infection, which led to the severe food and chemical allergies.  I thought back to how long it took me to accept that I was ill in the first place.  16 years ago I was struggling with the reality I wasn’t like I was before, something with my body was going wrong.  It took me even longer to realise that as a chronically ill person, I was now living with disability.  Years.

When my disability worsened a couple of years ago or so, accepting I needed the use of crutches was one of the biggest things to overcome for me.  Getting them was one thing, but taking them out with me, using them, and people seeing me using them, that was quite another thing.  What if someone saw me who knew me?  What if people stared?  It now marked me out as having mobility problems.  As far as I was concerned it was like a Belisha beacon.  This is in the day that disability wasn’t as stigmatised by the UK government as it is today.  I still use my crutches, but on the rare occasion I go out I now have to use a mobility scooter or wheelchair if I’m going to be going further than a short walk.  Again, adjustments to needing these have been needed, especially going round my home town, but now I don’t care like I did before.  They enable me.

So imagine being slapped round the face a few times with a wet fish.  You’d be pretty stunned, huh?  Then you’re told that you’ve spent the last 16 years of your life thinking your name was John or Jane, when actually you were called Rupert or Ruth.  You’re back to that wet fish aren’t you?  This is pretty much what I had to deal with last year when that rediagnosis happened.  Suddenly certain things were explained, why my allergies worsened and developed, why my skin was so awful, why I’d had golf balls for glands for years.  The list went on.  Then the realisation – there was treatment I could have to make me feel better.

So you see, ‘just’ having a chronic illness and disability requires a lot of adjustments, and I haven’t even mentioned the day-to-day adjustments to my life I’ve had to make and come to terms with.  Suffice it to say, resting is top of the agenda, and not much else gets done!

There are a few things I shall never accept that surround being chronically ill and disabled.  I shall never accept the increasing demonisation by this government of the disabled, who have too often been portrayed as scrounging fraudsters in the press together with selected examples backing this up.  I shall never accept the increasing hoops we have to jump through to claim the benefits we are entitled to so we can live (which is becoming more like a full-time job with every welfare reform).  Life for a chronically ill person is hard enough without having to deal with these things.

10 Days of Good Things

OK so maybe some most of the past 10 days have been occupied by a lot of resting, which has proved necessary, I have had quite a few achievements dotted around too.  Quite significant ones as well.

My birthday was a lovely day.  Having my hair done was wonderful, and it meant one less thing for me to have to do that evening before going out.  I also had a really lovely meal out with my family, at the only food establishment I trust with cooking my food locally.  I got some lovely presents – an amethyst ring, a necklace to match, a set of knitting needs, a skein of yarn, a funky lizard brooch and a letter rack – much more than I had expected.  And 30 isn’t that bad after all.

I’ve had to spend many of my days recently in the armchair with my feet up on the foot stool (which is huge, and almost turns the reclined armchair into a chaise lounge).  Because I also went insanely noise sensitive, and thus couldn’t entertain the idea of music, TV or films, I instead kept myself occupied with my cross-stitch and new-found hobby of knitting.  Alternating between the two is not only good to give the brain a rest – knitting a scarf using garter stitch requires no brain power at all – but cross-stitching is fiddly and my hands can’t do that for extended periods.  Obviously I do have to rest from the knitting as well for the same reason.  I’m coming on well with both the cross-stitch and the knitting though – I’m three-quarters done with the cross-stitch, and I’ve knitted about 2ft of scarf.

The past 10 days have also been good for socialising.  I don’t mean going out or having people round – I’ve been far too exhausted to entertain the idea – I mean online.  Having joined the knitting website almost a month ago, I also joined a new crafting group for people with chronic illnesses.  It has meant over-doing it a couple of times posting and reading, but interacting with some new names has been great.

I have to continue resting for the rest of the week – next Friday I graduate!

Catching Up

As you  may have noticed, I haven’t been posting much lately!  It’s sort of good though, as I have managed a couple of things in this time, but then I have also had to do a lot of resting in between (but then that’s pretty bog-standard).

On 29th February (if you can remember that far back, I can but only just!) it was a lovely spring-like day.  Warm and sunny.  I live near a lake, and ever since I’ve moved in to my current abode I have had my eye on a particular bench to sit on when the weather is nice enough and I feel well enough to.  So, this day, I felt I might like to try a little wander down to sit in the sun for a few minutes to get a dose of vitamin D.  I took my crutches and my camera, and headed for the bench.

Mr Robin Redbreast comes to say hello.

I took several photos that day while sat on the bench – of the lake, some sparrows, a helicopter, a couple of mallards – but this photo is the one that I was pleased with the most.  It was lovely there, and so quiet.  Only the sound of the birds could be heard.

It took me quite a few days to recover from what would normally be a short walk to the average person, but was (only just) able to attend the local ME group’s meeting.  I (again) had my crutches with me, and thankfully the seats there are fairly comfy, so I created a make-shift chaise lounge so I could have my feet up.  I managed to volunteer by sitting on the welcome/sign-in desk, and volunteered to be treasurer.

Me on Welcome Desk duty (having just polished off a Sezzy-friendly, Sezzy-made chocolate cake).

As I have volunteered for treasurer’s job, I have decided to take a course in bookkeeping and accounting, so that I have a foundation to actually do the job properly.  I have a basic understanding of accounts and a bit more on spreadsheets, but want to really know what I’m doing.  If I pass the course I’ll be able to register with the IAB.

Having then rested all week, on Saturday evening my family and I went to a family friend’s 60th birthday party.  It was quite hard work for me being there – the lights were bright and fluorescent, the hall was cold, and it was full of balloons to which I’m allergic.  I’m kind of glad that I have decided to have a quiet birthday with my family instead of trying to have a big party.  On the way home we had to make an unscheduled stop to A&E as while we were at the party my grandmother had been admitted – being in a no signal area meant we didn’t get the message until much later.  With the help of my sister, I managed to find out the situation from the hospital.

I have been resting a lot the past couple of days, so that I have a chance to enjoy tomorrow.  I am going to get my hair done, and then have a meal out with my family.  Then I will have to rest a lot so that I am ready for my graduation ceremony at the end of the month.

This post has taken me all day to write, but again, I’ve got it done.

Auf Deutsch

Last night I made another chocolate cake.  This time it wasn’t quite as impressive, looks wise, to the birthday cake I made, nor is it as big, but boy is it yummy!  A nice little Sezzy-sized loaf-sized bundle of yumminess.  I’m liking this baking lark now that I have the food processor to mix, and a dishwasher to clean everything afterwards!

The reason I baked the cake was because I had a friend over today.  She’s German and a retired teacher, and helped me lots through my final year of German studies, mostly ironing out a few grammatical problems I had.  I haven’t seen her for a while so I thought the cake would be a nice gesture.  It went down really well, and it’s even better than my last chocolate cake attempt!  I’ve actually just polished off the second slice today (I don’t think it’s going to last very long!).  Anyway, not only was the cake a success, but we spoke the entire time – 2 hours – in German.  That’s the first time I’ve actually spoken German like that since last year, and I was so pleased when she said as she was leaving that my German had remained good, that I seemed far more confident with it, and that it was good I understood her the entire time.  Yay!

Oh and I saw Mr Good-looking Neighbour Man last night too again.  He’d forgotten his key (again!) and remembered it was me who let him in before.  There’s a small chance I might see him Sunday, if he needs a new copy of the main entrance door key, as his seems to be duff anyway.  Still no idea if he’s single, but either way, it’s nice to talk to a neighbour here.  Meeting neighbours is a chance affair here, and it’s only the third time I’ve actually stopped and spoken to a neighbour.  I’m not complaining, I like the quiet and I’m a bit of a loner at times.  But company is nice at times.

I also registered with a knitting and crocheting site today, in readiness for starting to knit.  It’s a huge site, and I think I’ll be asking my friend who recommended it to me a lot of questions!

Time to rest now.

Dizzy, but it was fun getting there…

I’m exhausted, and a little on the dizzy side.  It’s been a challenging weekend, and I’ve done far too much.  It’s at times like this where I employ the phrase ending “… but it was fun getting there.”

Yesterday my parents took me to town to choose my birthday present.  I turn 30 in a little over 2 weeks time – a prospect that leaves me a little melancholy if I’m perfectly honest about it, not because I am to turn 30 but that it is another ‘big’ birthday since I got ill that I have not been well enough to do anything ‘big’ to celebrate, plus a few other reasons I won’t go into.  I’m still nowhere near recovered allergy-wise from my recent big hiccough, and the telling sign was I am back to reacting to virtually every shop I enter – for some really odd reason I was OK in Marks & Spencer!  The day was a success though, in that I chose some lovely presents for my birthday and my graduation, and got some nice shoes too.  With the aid of a mobility scooter I also bought some funky slipper socks at Sainsbury’s.

Today my family had a belated celebration meal at the only place I can eat fairly freely and without worry about my allergies.  It ‘only’ involved me sitting in a car, transferring to the table at the place, and eating, but by the end of the meal I knew I’d over-done it big time.  I get vertigo spells when I’m extremely exhausted or when I have over-done it, but before it has been limited to home, or where ever I am staying that night.  Today it happened while I was out.

I’m that exhausted and having vertigo spells that it’s taken me over 5 hours to write this, and I know I am going to have to do absolutely nothing for the next few days.

Now it’s time for bed.

The Cross-stitch Saga

For the past 10 years I’ve been working, on and off, on a cross-stitch project.  It was meant to be for my Dad’s 51st birthday, but due to a combination of illness, the intricacy of the pattern and 6 years of home study I simply have been unable to dedicate a lot of time to it.  Recently, with having to rest a lot more, I have managed to work on it a bit.

Yesterday I had a brief moment of disappointment when I realised I had made a mistake in the pattern, and couldn’t quite work out how or why.  However, I have managed to get back on track by making some alterations – thankfully it was in the grass, so it didn’t really matter anyway!  Managing to rectify such a complicated error filled me with quite a bit of satisfaction, more than I had expected.  Looking back at what I’d done today, I felt extremely pleased.

The third quarter is really starting to fill in now, and I’m so pleased about it.  Dad will be so pleased with it when it is done, although I am not setting myself a target.  It is best I just do what I can, when I can.  When I’m half-stitching blue sky, I know I am on the finishing straight.

A Meal and Nice Comments

Wednesday was a very good day.  I managed to do ‘just’ one big thing – I went out for dinner with a couple of fellow German students from my course in 2010.  We’ve made this an annual arrangement, so as to keep in contact.  One of the chaps kindly picked me up on the way to the pub restaurant, and we had a nice couple of hours out, catching up with a year’s worth of events.  This outing was the first time I’d been out properly (bar the mini excursion to Boots last Saturday) in almost a month.  It did mean that I couldn’t do anything else that day apart from recline with my feet up and rest, but that 2 hours out was well worth it.

Yesterday was very much a rest day, although while reclined with my feet up I also managed to work a bit on the cross-stitch project for Dad.  Slowly but surely I can see progress.  I hope that he will get this finished and framed by the end of this year – he’s already been waiting 10 years for it!

Another achievement for yesterday was managing to do some work on the website of the appeal fund that was set up for me.  The committee have allowed me to do this, and at least I know that I am helping where I am able to.  My task yesterday was to add a quote from the Patron.  What she had written was really touching, especially when she said that I was “brave and exceptionally kind” and that she “wanted to do anything” she could to help me.  As someone who usually thinks of others before themselves, it’s very moving to hear and know that there are all sort of people – close friends, acquaintances, strangers – that want to help me.  I will be eternally grateful.

Mum is on her way to visit me now.  I will be glad of her being here, as today I do need some help.  Accepting help, that is today’s achievement.

Life is for Learning

They say that life is for learning. When you have ME you learn something every day. Usually it’s what you can and can’t manage to do, and this can change every day.

Today I woke at 9am and got up at 9:30am. A real achievement as this is the earliest in a month that I have been up this early. Having learned from yesterday that I am still very run down and more so in the evenings, I decided to have a bath and to wash my hair.

I was just making a cup of tea to sit down for a rest after my bath, when Sainsbury’s came with my groceries. Having dealt with that I then received a phone call from a lady who wanted to ask me some questions about allergies. I don’t mind helping when I can, but I hadn’t realised how long we were on the phone for – 2hrs!

While I have done things today, and some very good things in some cases, it was far too much for me. I am currently reclined in my chair with my feet up, under a snuggle blanket and in some pain despite my pain medication. I need help.

Needing help is something in the past I have found difficult to accept. Asking for it was even harder. Lately I have become more accepting of the fact that I need to ask for help. Today I realise I need that help as soon as I can get it. It is not failure on my part, nor a sign of a weak mind. Quite the opposite. I am going to start practicing what I preach. When my GP returns from his hiatus I will request that he starts the process of getting me some help to look after myself.

For me, the biggest achievement is not what I’ve done today, it’s the realisation of what I need and when.

Phoning for Energy

Having an illness which causes exhaustion, wouldn’t it be great if we could just phone for energy, much like we phone a company for electricity and gas?  Unfortunately this facility hasn’t been developed yet, so I was left with the only option to chase up the energy that lets me heat and light my flat and to cook.

Tomorrow it will be a month that I have been in my new flat, and while NPower is writing constantly to a previous occupant (and getting the correspondence back again!), I had received nothing to ‘The New Occupant’ or to me by name.  So, logically the first port of call was to ring NPower, who kindly informed me that they didn’t supply the address but could if I wanted.  When I found that they offered no discounts for disabled customers I politely declined and indicated my quest would continue to find the real supplier.  This, according to NPower, was Scottish & Southern (for my electricity).

I duly phoned Scottish & Southern, hoping they also supplied the gas.  The customer services assistant was perplexed that there appeared to be no supply from them to my address, nor was there a previous or current account at the address, only a suggestion of an address a few doors down.

My next port of call was to ring the National Grid and Eastern EDF Energy to find out exactly who did supply me.  According to them both it was Scottish & Southern Power.  On hearing this I became worried, so contacted the letting agent that got me into the property and had, according to them, sorted this out for me.  It transpired that the previous tenant had told my landlord that the utility companies had been sorted out, so my landlord in turn had told the letting agency everything was sorted.  Thankfully meter readings are available for all utilities, including water, and will be sorted out in due course.  I’m so glad I don’t have to argue with Scottish & Southern that actually I really do have them supplying my address!

Having achieved all this, plus another phone call sorting out another important matter, I am utterly exhausted.  I was going to have a bath tonight, but as I am too exhausted after all those phone calls I will have an early night instead.

10 Minutes of the Real World

Yesterday was the first time in 2 weeks that I had been out into the Real World.  I was only out for a maximum of 10 minutes, and I was driven 2 minutes down the road to my destination (Boots, to collect a prescription), but that 10 minutes felt good.  Good in that I felt able to make that short trip.  I couldn’t have managed any longer, and had to rest when I got back, but it was good.

This wasn’t the first achievement of the day though, that was managing to get up at 10:20am, instead of the midday I had been getting up at while ill with flu.  I was a little later in getting up today (11am), but that’s still ok.  It’s still an overall small improvement.  I know it will take time to get back to where I was before the flu, but I will get there eventually.

I am going to go and recline in my armchair now, with my feet up, snuggle blanket and rest.