Relaxed But Not Exactly Refreshed

Last week was a stay at home holiday for me and Growler.  A “staycation” as my American frined Nina informs me.  Some British friends suggest if anything it should be a “stoliday”.

It was great to have a break from the normal routines, spend time with Growler and to go out and see different things.  Plus I had my own comfey bed and home comforts (and medications and suppliments) at hand.

So here’s what I did on my stay at home holiday …

Growler had the Friday and the following week off.  On the Friday we went to a nearby farm shop and bought the lemon curd I am partial too. Then we went to a nearby garden centre, had a look around the giftware and cards before a bit of cake in the cafe.

That first weekend we rested.  Well if we had travelled then we’d have done that.

Monday we travelled into Birmingham and had a picnic in the Botanical Gardens.  Unfortunately there was also a fun day for “underpriveledged children” and the place was heaving with kids in school parties and a loud sound system with children orientated disco music.  Ah well.  We were warned about the noise by the lady on the ticket desk.

So we left and headed to the Sea Life centre (aquarium).  Which had less people but an even louder PA system with new age piped music.  I’ve never been deafened by new age mystical music and sea sound effects before so that was quite an experience. 

At the risk of moaning … access within the building was alright but getting through the damn doors was a different matter.  And when we found the otters there were half a dozen members of staff stood in front of the enclosure.  We were told we had missed the feeding and if we didn’t want to queue for the 4d cinema to (more or less) move along. So I saw one otter for all of 2 seconds. Grump.

Even so it was good to out and about and with my lovely Growler.  And we made a good start on what was to become major sugar overload during the next week.

Tuesday we went all the way to Chester Zoo.  Turns out it’s not that far to go.  I was prepared for school parties but there were a lot of teenagers old enough to be let loose on their own (in packs of course) but not old enough to not be irritating.  But once we moved from the main concourse where the cafes were it got a little less busy. 

We saw lions, elephants, giraffes, spectacled bears (didn’t get a photo though), meerkats, jaguars, bats which flew around out heads in a special indoor darkened enclosure, penguins, seals and lots more.

After a long day on Tuesday we kept it local and low key on Wednesday.  Starting with a trip to a local garden centre restaraunt for a full english breakfast (oh boy were we full!) we then went into Lichfield and took a look around the cathedral.  We’ve lived here at least 5 years and never actually been and looken around it properly before.  I lit a candle for … well … everyone really. 

Then we had lovely cake in the cathedral coffee shop before visiting the gift shop via Erasmus the bunny rabbit.  He’s the rabbit that lives in the gardens of Erasmus Darmin’s house (the house I don’t think is wheelchair accessible – nothing on their web site about access – so we didn’t go in the house).

On the way home we went into the local library to rent some films on DVD.  I love libraries and I miss being able to pop in.  The smell of libraries is wonderful to me.  We spent out afternoon back home watching one of the DVD’s.

Thursday we popped into Marks and Spencers and I bought a new top for my friend’s wedding which is this weekend.  Then onto the cinema to see the new Harry Potter film. 

It was my first experience of a cinema using the wheelchair to make things “easier” but it was a bit of a nightmare.  The trailers were showing by the time we got in and we were both carrying snacks.  Poor Growler was trying to move me into a wheelchair space in the dark with snacks in his hands.  The usher waved his torch around for 3 seconds, stood in the dark and watched for another 15 seconds and then buggered off. 

It was kind of a stressful start.  And again although it’s level and ramped access inside the building the doors were not friendly and the disabled toilet door had one of those closing mechanisms that made the door super heavy.  But we enjoyed the film and the snacks very much.

By Friday I was really tired but not wanting to waste any opportunity to go out.  So we drove to Ironbridge.  It was raining so hard and I was so knackered we never got out of the car.  We wound our way back to a garden centre some way away and had lovely cake before heading home.

The weekend was spent watching the British Open Golf on the telly and generally lazing.

As you can tell I did a LOT more on my week off than I do normally and I was really starting to struggle by the weekend.  So I’m not exactly refreshed and rested.  But the change of scene, the freedom to go out and about, and being able to hang out with my Growler made it a great week off.  I find myself this week ready to tackle my to do list with renewed enthusiasm.  The challenge is to remember to make resting part of my routine again.

Not having to travel to, or cope with the changes of different accommodation was a real help I think to make the most of the holiday.  Although it’s very nice to have different walls to look at and someone else whose done the cleaning when you do stay away.

Inventing a Cure for ME

image by the rocketeer on flickr

I’m considering inventing a cure for ME.  I can charge people a bundle for my scientifically proven treatment, do TV appearances and tell everyone how my cure can cure everything including ME.

What money I make I can donate to real scientific trials and biomedical research.

In the meantime I’ll be curing thousands of people. Even if it’s only for a month, a week or a day at a time that’s still a cure right?

It’s about time we had a cure for ME that’s really fun. 

So I’m thinking that bubblegum might cure ME.  Or perhaps rfairground rides.  Or maybe just that cake has magical healing properties.  I would suggest combining all of these in a strict treatment regime in order to be successful. 

I would tell you right now how to combine bubblegum, fairground rides and cake (BFC) but it’s better that you buy my book and DVD or subscribe to my weekly online course. This will vaguely outline the flimsy evidence but convince you that you’re a big fat loser if you don’t at least try my BFC.

Of course you’ll also need to wear one of my special curing hats.  If you’re not willing to wear a comedy curing hat then that tells me you’re not really ready to accept wellness into your life. 

Please don’t think you can get better using your own hat – you need one of my special cure hats only available from a licensed practioner.  I have testimonials from lots of people who felt a bit tired and used the curing hats with amazing results.  Don’t ask me how it works, just take my word for it that it does.

I’m sure once the money comes rolling in I’ll feel like a new woman too.

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In other news I am taking Astragalus again.  The last time I had any sort of real improvement in day to day function was after I had been taking astragalus.  This is dangerous to admit because it indicates to the voodoo cure lot that I am indeed feeling a little bit desperate to get better.  Especially as I started taking astragalus because a woman I’ve never met told me on the phone it would cure me (a homeopath a family member had been using).  But I have a huge stash of it so I may as well take it and wait for a miracle.

I did read that astragalus is supposed to help support positive T cell production and has had some clinical success in assisting the effectiveness of HIV treatments.  But that’s just one study. 

Ah well.  Best pop my curing hat on and get cracking on marketing this cure I’m working on.

What Awareness For ME Means To Me

Raising awareness of ME/CFS is something I try to do all year round. As a person with ME it’s not easy to be an activist; to lobby government, drive campaigns, raise funds or do anything very much in fact.  But I think a slow drip-drip effect can be more effective than you might think.

Thanks to the internet I am able to connect with all sorts of people – both those with ME, chronic health conditions, disabilities and those without. Through my art blog, Twitter, Facebook, Flickr and others I can show aspects of an ordinary life affected by ME.  There is more to me than my illness, which helps creates bonds and common interests, so that when ME is a factor it can be surprising, sometimes shocking, to others but it is another little nugget of awareness.

When I do come into contact with people face to face I talk about lots of things but I am also fairly open about the limits and challenges my illness imposes on my life and that of my family. 

So when the hairdresser, or the guy who came to clear the garden say “ME – that’s where you’re tired all the time?” and I tell them how it can affect sleep, stomach, memory/brain function, give you aches/pains and never give you a day off for years and years.  So maybe when ME is mentioned on the news, or down the pub, and someone says “that’s the thing where you stop in bed all day” they may be able to say “actually did you know …”.  Because they met a friendly, kind soul once who had ME and told them how it was more than just tiredness. That’s my hope.

When my local Twitter friends arrange a social meet up and I explain I’ll be there only if I am well enough they start to see how ME affects everything I do or want to do.  And when I manage to attend but am exhausted and ill the next day they get to hear about it first hand and maybe see that it’s a complex illness and see how it really impacts on a life.

hey find out I’m honest, friendly, happy, enthusiastic and kind.  Not some mental case who has imagined an illness.  They get to see how much I want to live a full active life and how ME makes that so impossible.  And they find this out by getting to know me as a person, who happens to have ME.

I’ve heard so many times from family members that when they have told friends or acquaintances that I have ME so many reveal they know someone with ME too.  And in talking about it they spread a little awareness and don’t feel so alone.  Maybe that person will look at their ME acquintance in a different light after finding out more from my folks.  Maybe.

I choose a couple of ME organisations to support and to direct people towards.  For me it is ME Research UK and the ME Association both here in the UK.  I try to keep it simple.  When I can, I do more.  I started the ME Aware blog this year to help inspire other people like me who felt a bit lost with ME Awareness Day/Week/Month and felt helpless to know what one person can do to make a difference. 

Small things add up.  Single voices can form a noisy crowd.

image by moonbird on flickr

OK so maybe my little day to day efforts are not full on driven attempts for getting more funding for biomedical research, or getting clinical guidelines changed to be effective and fair, or making the benefits system fairer for those with ME and fluctuating conditions, or getting the media to stop saying “Yuppie Flu”. 

But it is a drip drip drip of awareness.  And one drop makes a ripple that can reach far and wide.

Trip to Twycross Zoo

Growler took a day off work and we went to Twycross Zoo for the day. When they described themselves as a World Primate Centre I hadn’t quite been prepared for how many monkeys and apes there would be there.  But I did get to see penguins, a couple of lions, a couple of leopards, very very sweet meerkcats and prairie dogs, sealions and lots of other creatures.

   

      

Many of the paths appear to have recently been covered in a fresh surface of gravel which made using the wheelchair quite trying.  The cafes weren’t brilliantly accessible (or serving much beyond chips and burgers).  But they were lots of places to picnic and always a good view of animals from a wheelchair as so much is designed with small children in mind.

    

    

I enjoyed my day out.  It’s been a long time since I went to a traditional zoo and I wasn’t totally comfortable with all of the enclosures.  There was also a distinct lack of decent manners from the majority of the other visitors! I don’t think we’ll be rushing back there.

But any day out with Growler is always a joy.  I also managed to take some photos and some video so you could visit some of the animals with me.

The Ducks Came To Me

I love ducks.  More so since I’ve been ill with ME.  A lot of the places we visit in my wheelcahir to get some air and expand my world seem to have water and ducks.

Ducks make me smile and usually giggle.  They just go about their lives undisturbed by me.  They are duck through and through.  I watch them waddle about on land and I suppose I feel a kindred spirit.  Me in my wheelchair and them a duck out of water

Since Growler started his full time job back in October I’m not getting out as much as I used to.  When he was self employed we could take an hour or two out of the day to go a wheelie walk and be flexible enough to do it at short notice when I had a day I felt well enough to try.

This morning I got my duck fix without having to leave my bedroom.  Because they came to me.  Growler handed me my camera and opened the bedroom curtains to reveal a family of 3 ducks splashing about in our garden pond.

They had a clean and a quack chat as they were led around the garden by Mrs Duck.  It looked very much like a house viewing as they explored the various corners of the garden and chatted in quiet quacks.

Eventually they got spooked, I expect by a cat, and they flew up towards the house and over the roof in formation quacking loudly as they went.

I hope they liked the place enough to come again.

Bright In Small Doses

Photo by pilipala9

On Tuesday evening I attended a small meet up of local folks who use Twitter.  There were 9 of us in all, most meeting each other for the first time.

It was good to be and doing something different and I enjoyed myself very much.  I hope to meet up with them (and probably more new people) again in the future.

Deciding whether to attend or not was really difficult.  When you have ME it’s not always just a case of deciding if you want to and if you have the time.  Desire and time are things I have plenty of – it’s the ability to exert myself without making myself ill that’s the problem.

I was out with Growler for a few hours.  First we had a meal out (lovely!) and then onto the pub to meet the others for just under an hour and a half.  I felt myself zoning out after an hour and was starting to fade so we left ahead of almost everyone else.

I do worry how people see me in terms of representing an illness that stays hidden at home a lot of the time.  I find myself buoyed up with nervous anticipation and enjoying meeting interesting people. 

Enthusiasm carries me along well – but I do falter when people ask me direct questions.  It takes me notable extra seconds to literally search my memory banks for an answer & consider how/if to mediate a response especially if illness is a factor in the answer. Do they want to hear the details, or broad brushstrokes of how being ill effects how long it takes me to paint a canvas, or do I give a broader answer without highlighting illness?  When he asked “is it tough?” did he mean painting in general, or painting with my illness, or my life as a whole?

As I get to know people better I can often guage such things better and so not take as long to do the mental gymnastics.  But it does make me sad that they get to know me as the person whose mind goes blank and ummms a lot.  They meet the Rachel who isn’t very sharp and don’t know that I’m not as sharp as I used to be because they only know me now. 

Vacant by RachelCreative

Then after an hour I am fading and looking blank as even the muscles for my smile are numb.  I’m too tired to observe if anyone has sensed a change or just thinks I am always like that (vacant, rude, gormless – I don’t  know what they think). 

If they do see the change is it possible they recognise it’s the illness?  Or is the concept so alien it doesn’t factor?  I can (just about) remember being healthy and I took people as they came.  Take me at face value without factoring that ME is silently dulling me and I may not come across as the caring intelligent person I really am on the inside.

It leads me to another question – am I denying the part of me that is me with ME?  After me dulled with ME in a social situation IS a part of who I am now.  If I am vacant and absent and forgetful in public then in a way that is showing a true part of myself.

I start the evening well and bright because I manage my condition as carefully as I can.  I manage it so that I am able to be there in the first place.  If the exertion and stimulation melt my brain and body into submission then is that not just another aspect of me?  I am not just the bright woman I am at rest on my own sofa without physical interaction?

That’s a bitter pill to swallow.  I’m pretty sure Growler will say “never make assumptions”.  That I notice the dulled down, vacant me much more than anyone else.  Maybe.

In one sense I’d like those lovely people I met to understand that a few hours out one evening takes much more than that out of my week. 

I curbed a lot of activity the day before and the day of the meet in order to be as well as I could be on the night.  I got home and my brain was buzzing with the evenings conversation and characters like electricity pulsing through my mind.  It took a good hour for me to calm my mind enough to settle down to sleep.  Meanwhile my body was crushingly exhausted.  The next morning I  woke early still with my mind buzzing having not had enough sleep and feeling hungover from the dose of amitriptyline I had to take late the night before because I was wanting to be able to chat and not be totally spaced out before I even got to the pub.

That day after the meet all I managed to do was use my computer and watch TV.  My mind and body were slow.  The next day and I feel the same.  The plans I had for this week have had to be postponed until I have recovered some more from the outing.  I’m not bedridden, but I am slow and ill so need to avoid adding any further malaise to what I already have.  I was supposed to have a Growler assisted bath last night but it was too much for me.  No bath, no art, no cleaning and a dulled mind with forgetfulness (more than usual), a misbehaving tummy (which was much better until this), being on the cusp of my headache threshold – all for a few hours out one evening.

But I also know that this knowledge could leave those folks feeling awful.  Asking someone to do something for an hour that will leave them feeling ill and unable to even wash for a couple of days seems unfair.  They end up feeling uncomfortable knowing the cost or saying “if you’re tired/ill you don’t have to come you know” not understanding that I’m always tired/ill.

I want them to understand but I don’t want to burden anyone with something they can do little about.  Is it fair to share the suffering?  I suppose the one thing that can be offered is understanding.  Share in the knowledge, the reality and understand what effect things have on people with ME without feeling the need to find a fix or a cure. Yes to understand, or want to understand.

Photo by Tomas Hawk

For me it’s positive to be out and connecting with people about anything except illness.  As someone who is mainly housebound and incapacitatedin many ways it’s difficult not to feel like an outsider.  Common experience is limited.  Even talking to people who live in the same city as me I can’t share much because all I see is my own house and not the outside world.  But it does give me a way to connect to that outside world and some of the people in it.

I am happy to celebrate that I am able to go and have one good hour.  I can remember a time when that would not have been possible and holding a conversation longer than a few minutes felt impossible, let alone with a bunch of strangers in a noisy pub.  So I’m thankful of what I do have but with an eye on what’s still left to gain.