Big Weekend

I had a big weekend.  Growler took a few days off over Bank Holiday to have a long weekend and I found myself wanting to maximise on the opportunity to go out.  What I really wanted was to feel “normal”.

Friday Growler managed to squeeze in a long cycle training ride in the morning for his C2C challenge in July (to riase awareness for ME and carers).  Then in the afternoon he took me out to a nearby farm shop with a cafe and craft outlets.  I was grumpy and the tea was grey.  When we got home it all ended with me having a massive cry and an outpouring of unsaid things.  Lots of it I seem to recall about life with ME, feeling isolated, disconnected and a bit useless.  I heard myself asking a big question “If there’s no proven treatment than what do I do?  I carry on, trying not to do harm and keep going along like I am just hoping thing will get better?  Is that all there is?”.

Talking with Growler helped.  Not everything had an answer or resolution but that’s just how it is.  But I had gotten myself to a place where I thought I was really on my own now and Growler was able to remind why that’s not true.

Saturday my brother and his girlfriend came to visit.  We had cake and tea sitting on the lawn in the sunshine.  It was good to catch up.

Sunday my dad came over to help Growler with a DIY job.  We had time to chat and drink tea.

Monday there was a big procession and fair in my local town which I was determined to go to this year.  Growler pushed me into town in the wheelchair and we sat for an hour or more in the sun waiting for the parade to pass by.  I had a good vantage point to take a few photographs.  As the procession approached we got encircled by a family standing behind, to both sides and in front of us.  You can’t just side step someone when you’re in a wheelchair.  It wasn’t a great situation to be in and difficult to know how to tell them to shift especially when the chatter between them was bruning all my brain power.  I did get to see the parade of floats but only fleeting glimpses and it was difficult to get photos as their kids kept diving in front of me to put donations in the collection buckets.

Afterwards Growler took me to the park where there was a fair including stalls, fairground rides and a makeshift arena with various displays.  We had to queque for a while but a security guard let us through the barriers early much to our relief.  It was hard work for Growler as the grass was very long and pushing the wheelchair was really difficult.  We tried to watch the motorcycle display team in the main arena but it was difficult to see beyond the crowds.  Finally he found a spot on a raised piece of ground where I could see a tiny bit.  Someone moved and opened up a bigger gap to see.   People were using it as a path through the crowds so he moved me a bit closer in the wheelchair but not so much to block the path.  Then a huge man came and stood int he gap, put his son on his shoulders and glared at us.  We decided it was time to go.  I was so angry and upset at the attitude some people have.  Like Growler said the man also blocked the view of lots of people standing so it wasn’t a wheelchair thing – he was just rude full stop.  It was a disappointing end to the day.  As we wheeled away I did get to see two of the stunts from the motorcycle team as they first made a pyramid and then did a jump above the heads of the crowd.

After a disappointing end to Monday I was keen to do something fun with Growler on Tuesday.  I wanted to spend some time with him but not feel overwhelmed or too busy.  I was pretty wiped from the weekend though.  So he made a picnic and we went to the local park.  It was a great picnic but I got really cold! The sun disappeared as soon as we sat down on the picnic rug.  But we enjoyed being out together.

I knew when I got dressed to go out on Tuesday that would mean I’d not do anything for the rest of the week.  No painting for instance.

Yesterday (Wednesday) I was pretty wiped.  Today the same.  My mom is coming over to visit this afternoon.  Sometimes her visits leave me very wiped out, other times not so much.  It means I will have seen one of my brothers, my dad and my mum in the same week! Unusual.

Saturday I am going to a wedding of one of Growler’s friends.  Hence needing to take it easy for the next few days.  Although I will have to have a bath tonight so not alll plain sailing.

The trade off for that wanting to feel normal is now feeling run down, wiped out, easily confused and doing the bare minimum. So that’s not exactly being normal.  I hope it’s just a temporary feeling of rebellion against my situation and I can settle into the quiet slow life once more.20080704 bike back wheel

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8 Responses to “Big Weekend”


  1. 1 cusp May 28, 2009 at 11:23 am

    No matter how you look at it, it’s a crappy situation and as someone else said to me not long ago (a PWME) …you get so sick of being so chilled and ‘zen’ about it all when all you really want to do is scream with frustration.

    Last week my partner’s rels. came over from the Continent. I was wiped because we’d been getting things ready for daughter’s birthday. The rels. are sweet and kind but really don’t understand the realities of life with M.E. It was a beautiful day and all I wanted was to join partner and rels. for a little trip and lunch but I just knew I couldn’t and within 10 minutes of being out I’d be pleading to be brought home. I needed a rest day. As I watched them leave without me AGAIN I could have (well I did) wept and all the pleading on their behalf of ‘couldn’t I just ?….’ and ‘…suppose they…’ and ‘if we don’t go so far (they meant going 15 miles instead of 30)..’ made it worse.

    The next day we were togther at home and the weather was still lovely. I was more rested and able to enjoy their company. I realised that I just have to accept how it is and enjoy the good bits when I can but sometimes, just sometimes, I long for the spontaneity of the heathy

    • 2 rachelcreative May 28, 2009 at 4:32 pm

      My GP famously once said about life with CFS “It’s shit isn’t it?”. Very accurate.

      Yep that rings true.

      How awfully frustrating for you with your rels and lunch. I got tripped up a couple of weeks ago by wanting to just be normal and not make a fuss and it was a mistake because I was so wiped and poorly the next day. It’s so hard sometimes!

      Spontaneity yes. I was longing for a simple thing to just be simple. No planning and strategy or relying on someone else just to go to a shop and buy something ordinary.

      I think on balance I (and we) do a brilliant job of coping and having the best of life that we can. But sometimes it scrambles my noodle!

  2. 3 ashysheela May 28, 2009 at 12:54 pm

    so a big weekend but a mixed bag… so hard to do the normal things in the normy world. i hope your bath and mum are relaxing and calming and make you feel a bit better, rather than being too much to cope with. i shall cross everything!

    • 4 rachelcreative May 28, 2009 at 4:34 pm

      Aw thanks. Mum’s visit was enjoyable. It was good to catch up. She was pre-warned I am wiped and was on top form. I even asked her for her thoughts on some of The Big Questions That Never Seem To Bloody Go Away. And there were no tears or grumps from either of us.

  3. 5 ashysheela May 28, 2009 at 5:51 pm

    that’s good news – glad you could talk about it a bit and feel bit better, one day at a time eh?

  4. 6 Tom Anderson May 28, 2009 at 6:58 pm

    Another wonderfully written moving piece , makes me want to reach out and give you a big hug to make it all better.

    ” I heard myself asking a big question “If there’s no proven treatment than what do I do? I carry on, trying not to do harm and keep going along like I am just hoping thing will get better? Is that all there is?”

    There is ! and No it’s not!

    A few weeks ago we started redecorating , I fitted a carpet and hung 4 doors..no problems..Helen started painting ,odour free paints, I got flattened ,recovered after some paint free days, then got flattened again and the gut problems errupted.
    Now OK and can walk 3 miles easily with no after effects.

    I am on my third year of this treatment http://www.theperrinclinic.com/default.asp
    PLEASE READ
    It ties in with this article
    http://breathing.com/articles/nose-breathing.htm
    especially point 6
    Nasal filters here
    http://www.superliving.co.uk/pharmacy/your-health/allergies/hay-fever/nasalair-guard-14.html

    Before starting with the Perrin Technique I’d had a severe depressive incident , down that big black hole from which there is no return.
    My “normal” depression and symptom outbreaks were usually fortnightly , would last 3 to 4 days , then go , so things were manageable and liveable with , but there were exceptions to the normal.
    Now everything is getting better and better ,slowly yes , but in a noticeable way.
    This is the nearest I can get to giving you a big hug and making it all better.

    Tom

  5. 7 Sue May 30, 2009 at 1:56 am

    Wow, you did a lot last weekend. It sounds like fun – sorry you had to pay the price afterward.

    I related well to your description of breaking down and crying. My husband and I had a similar episode last weekend. We started out arguing and fighting over something really trivial, blaming each other, etc. Eventually, we realized what was underlying all our stress – duh – CFS. It was good to clear the air and express the stresses we’d both been feeling,and things have been better since then. Sometimes you just have to cry.

    Sue

  6. 8 Rachel M June 3, 2009 at 7:54 am

    I’m sorry you didn’t have a good long weekend… But I was happy that you and Paul enjoyed the picnic.

    Sometimes I feel being isolated and stuck in my place forever are an advantage. I get to feel “normal” in my own right as I don’t need to keep up with able bodied people. However, the price I’m paying is too much. Loneliness sometimes eats my soul. We cannot have ideal balance, can we?

    I hope your depression will get better soon.
    As you always cheer me up, “you are not useless.”


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