Archive for July, 2009

A Great Honour

Today is the civil marriage ceremony of my best friend to a really lovely guy. It will be an intimate ceremony – just them, her parents, us and 2 other friends.  Growler and I have been asked to be witnesses.  I am so honoured to be asked and so excited for her.  She’s happy and about to be wed.

In a few days they will be off to Canada to see the groom’s family and celebrate with them and then the proper wedding is in September when they will be having a handfasting ceremony surrounded by friends and family.

When I sometimes feel I have so little to offer because of my ME/CFS limitations it’s extra special that our friendship endures and thrives.  And that part of what strengthened it happened since I got ill.  That listening, talking and caring is much valued.  That despite the changes in my our lives we still connect.

One of the readings at today’s ceremony is taken from a book of poetry I bought her 3 years ago to try and help with the nasty break up with her ex-boyfriend, not long after my own wedding and them talking about getting engaged.  Three years later she’s marrying a wonderful bloke who loves her and brings out the best in her and her him.

It’s a great honour to be asked to the ceremony.  Especially to have the honour of being a legal witness.  But the best part if seeing this new and happy chapter in her life unfold.


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.

20090713 bird cage

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.

20090713 hello turtle

20090713 through the round window

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.

20090714 meerkats and humans

20090714 giraffes at chester zoo

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. 

20090715 erasmus the bunny

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).

20090715 lichfield

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.

20090714 self

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.

Not Totally Re-Assured

The ME Association have new advice on Swine Flu

1  Are people with ME/CFS more at risk of catching swine flu?
Overall, the answer is probably no.  However, if you belong to a sub-group who easily pick up infections, especially coughs, colds and flu-like infections, then the risk of catching swine flu may well be slightly higher than for normal healthy people.

They are saying that generally people with ME/CFS  are not at increased risk of catching swine flu or having complications from it unless you have other underlying health problems (like asthma) or are severely affected or bedbound.

I’m not totally re-assured having had a minor viral infection in the past cause a chest infection which lasted for 2 months when my husband and brother got over the same bug in a week.

But they say:

“Although a variety of immune system abnormalities can occur in ME/CFS, they are not usually consistent with the sort of immune system deficiency that makes people much more susceptible to this type of infection.”

I’m trying to be more relaxed about it. But when a common cold can rob me of a couple of months it’s difficult not to be a bit worried about what effect swine flu might have.

I would just like the ME Association to place more emphasis on the risks for that sub-group who easily pick up infections, for those severely affected, for those bed-bound and for those for whom infection worsens their condition.  Because if a group like them don’t highlight the risk factors for these people to health professionals, then who will?

If I get swine flu will the nurse on the phoneline take any notice of my past experience with virus and colds lasting for months and affecting me badly? Or will they just say that as I don’t have asthma I’ll be fine?

I guess a lot of people think I am a bit paranoid worrying about this.  But when this virus could set me back for months, when I might face a sudden and significant debilitation, it’s kind of worrying.


Push It 11 Sep 2011

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