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.

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.

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.

Achieved, Check

1. Sorted out a prescription, check.
2. Chased up MP, check.
3. Tackled electricity company about Warm Home Discount, check.
4. Helped a friend, check.
5. Eaten well all day, check.
6. Prepared bins for tomorrow, check.
7. Knackered, check.

Tired But Not Sleepy

Yes, you can be tired without being sleepy. ME sufferers will recognise this frustrating situation well. So while I lie here in bed, connect to here via my phone and try to make myself tired enough to be sleepy, you lucky people reading this get to know what my achievements were today (well, yesterday really, but tomorrow only starts after I’ve slept).

Dad and I travelled back from my clinic, though what should have been a nice 1 hour 30 minute journey at the very most turned into an arduous 3 hour 30 minute haul, all thanks to a road closure and subsequent traffic jam. However with the help of my trusty phone and its various apps, I found out exactly what was going on and created a diversion.

When finally we were home we were more than ready for lunch, so had a meal at Sainsbury’s. Nothing special and it was only just lukewarm, but it filled a gap that needed filling. Plus, I didn’t react adversely to it. That was my sixth meal that I happily ate. It’s so good to eat again! I love my food!

Lunch eaten, I deposited my crutches at Customer Services and traded them in, albeit temporarily, for a bright orange mobility scooter. With the help of Dad, who got everything from the shelves I couldn’t reach (which was most of the time), I managed to do the first full grocery shopping in a long time. Without that scooter I wouldn’t be able to do it. I’m just so pleased I had the courage to start using them. For as long as I need them, I’m not turning back.

My oldest friend came over this evening to see me too. I normally wouldn’t have had visitors after such a long and busy day, however it was really good to have the company. Today is the most poorly he’s probably ever seen me, and yes I did feel self-conscious with my skin flared and being so skinny (or as he kindly put it, slender), but I think in some ways it did me good to allow someone to see me ill like that. Probably all ways if I think about it!

One of my best friends also phoned up briefly just to check on me after my trip away to the clinic. I am lucky to have some really good friends around me. I might not see them all as much as I’d like, but to have them there is amazing.

I know that in one day I did a lot, more than I have done since my health nose-dived almost 2 weeks ago, but it made a nice change from feeling utterly weak and cut-off from the real world. I must take it easy for the next few days, but hopefully I can get some strength and finally, maybe, even arrange to have friends over – there are a few I haven’t seen in such a long time, and with one thing and another it just hasn’t happened. I do need to try and straighten the flat up a bit though!

Now I think I can sleep.

Life is like the Grand National

Life likes to throw up the little hurdles sometimes to challenge us. When you have illnesses such as ME and severe allergies these hurdles can be like facing Beeches Brook in the Grand National. I am at one such hurdle right now. One which I hope to clear after a little assistance next week.

Despite facing my personal equivalent of Beeches Brook I have managed to achieve quite a bit today (well, technically yesterday now!):

• I rang my university to sort final assistance arrangements for my graduation ceremony;
• I wrote a blurb for some fund-raising efforts in May;
• I rang and wrote a letter to a caterer to provide them with the list of foods I’m ok with and allergic to;
• I wrote two emails to my clinic in preparation for my unexpectedly early visit next week;
• I spoke to a friend about their wedding arrangements.

It’s weird, but even though my body is otherwise complaining at rather high-pitched, unmissable volumes, my brain today allowed me to get those few things done. I must take it very easy this weekend. This horse needs to jump Beeches Brook.

A Lot Sometimes Happens in a Week

I haven’t blogged in a week, but that’s a good thing.

Last Thursday I got my hair cut.  The local community transport picked me up and brought me home, and in between I had an hour’s pampering.  It was exhausting (yes, being pampered can be exhausting when you have ME!) but it felt so good.  It was even cheaper than normal thanks to redeeming some loyalty point, and I even managed to get a natural styling product that I’m OK with free.  Bonus!  I hasten to add I didn’t realise I’d not been charged until I got home.

On Friday I had to go to the surgery to see the nurse, and afterwards I went to Sainsbury’s and used one of their disability scooters to be able to get around the store to get the prescription made up.  Again, this was all exhausting, but I certainly couldn’t have done this without using the scooter.

On Saturday my family and I went to the O2 Arena in London to see the Strictly Come Dancing Live tour.  Dad had won tickets at work for us to be in one of the hospitality suites.  This was a truly enjoyable day, and exhausting despite my crutches, all the assistance my family gave me on the journeys there and back, and the wheelchair assistance that was provided once we arrived at the venue.

I have been resting ever since, and will be taking it extremely easy all this month, apart from one night out for Dad’s birthday in one week’s time.  That reminds me, I must buy him a present.  Oops!

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.

Finding Inspiration

Today I read a post by a friend: Scott Jordan Harris: keeping a diary keeps me sane.  I would never proclaim to be sane, in fact I think sanity is quite over-rated!  However what Scott discusses in this blog on the BBC Ouch! site rings true.  When you are so severely ill, it’s easy to over-look even the smallest of accomplishments each day.  I am guilty as charged.

I consider myself generally a positive person, despite the adversity of illness and disability that I find myself in, but I know that I don’t always recognise the positives in my life.  Sure, the big things yes.  Last year I completed my BA (hons) Humanities with German and Music with a lower second-class honours, and bagged myself a Diploma in German and a Diploma in Music into the bargain.  It took me 6 years of home-study, but I got there.  But it’s the small things that I tend to over-look – I think most of us do.

So today, because of Scott’s blog post, I am inspired to start a positive blog.  It might not be written every day, I know that and am not going to kid myself otherwise.  But just writing here will be an achievement in itself.

So far my achievements today have been:

• having a bath and washing my hair on my own for the first time since I became ill with flu a couple of weeks ago;
• having the clarity of mind enough to pay a bill;
• arranging a window cleaner for my 2, very dirty, flat windows;
• putting a small load of washing on;
• getting my post from the in-tray;
• putting half a dozen towels in their new home;
• setting this blog up and writing this post.

The achievement I’m most proud of is the first one.  Why?  It’s the most exhausting to do out of everything in that list due to the sheer physical effort involved.

I plan to rest for the rest of the afternoon and this evening – feet up, reclined in front of the TV watching something cheerful.  Now I feel like I’ve earned that rest.