Wednesday 26 November 2014

Fun things to do when you have M.E. Part 2

A few months ago I posted part 1 of fun thins to do when you have M.E. here is part 2!


Quality relaxation time

When your ill nothing is more of a treat than to be truly relaxed, but how do we achieve this when in pain or fatigued?  As sufferers of chronic illnesses we spend a lot of time resting and doing low energy activities, it can be difficult to switch into off mode.  Here is my list of the top three ways to find relaxation:

-Listening to a good radio programme or audio book.  There is nothing like the escapism that comes with it, especially when unable to leave the house.  It avoids the pain and possible overestimation of watching a screen.

-Using essential oils to create positivity and calmness.  I use a lot of Lush products they are filled with natural oils, they usually say on the description which mood they are intended to create.  I have started to build up a collection of aromatherapy oils, they are so good for all sorts of natural remedies and nothing can beat the real deal, I usually use lavender to help me sleep.

-Sunlight.  In the summer I like to lie outside in the sun, the natural endorphins caused by sunlight are sure to lift the spirit, and I can never be too warm!  ...Its not the right time of year for that thought!  In the winter I still like to try and get outside and feel the breeze against my skin as long as it's mild.  At home there is a lovely park bench that I like to sit on, I have't quite found anywhere in Exeter yet. 




The mini Comforter from Lush





Pets!

This is the only thing on the list that I haven't actually done.  It's something that I wishes I had done when I was housebound, as I think it would have helped a lot.  Now whilst I am at uni it is impossible.  A lot of my M.E. friends enjoy snuggling up with their pets, and find them to be a great source of comfort on bad days.  It is common for people get pets once they have become ill, as it is a good way to combat loneliness.  The only problem is that they do require having someone to look after them, preferably someone who doesn't require care themselves!



A friend's pet





Simple crafts

There are so many great crafts, card making, jewellery making, cross stitch, knitting, crochet etc...
Many of these can be done whilst sat in bed, and make great gifts.  Craft kits are a good way to get started, they have all of the parts inside, saving on time and energy traipsing around to find all of the components.  I will never forget receiving a cross stitch kit in a Secret Santa and thinking what an amazing gift for a person with M.E!

For a while me and my sister used to go to a local art store to paint pottery.  It would usually be to celebrate a birthday, or as a treat during the holidays.  It was just about manageable for me, and great alternative to some of the other "high energy" celebration options.


As it has become obvious on this blog, I am quite partial to knitting!





Visit an indoor shopping centre

They are a comfortable temperature which save on energy, and all of the shops are in one place rather than spread all over the high street.   Its especially fun to go to these places when there are seasonal decorations!

For wheelchairs users shopping outdoors can be a real chore with curbs and uneven footpaths; malls have smooth surfaces making it easier for both the carer and the person in the chair.  The layout is generally more spread out, avoiding that awful scenario of having to push through narrow shopping aisles or heavy crowds.  Most indoor shopping centres have a shop mobility centre where wheelchairs can be hired with a deposit which is what I always do! 



This isn't the best example, because it has stairs in, but its all I have.



What do you do to treat yourself?

Saturday 15 November 2014

My new pets!

Since I learned to knit I have been making things for Operation Christmas Child.  One of my favourite things to make are these elephant hand puppets!

The pattern is no longer available, otherwise I would link it but I got it from the Operation Christmas Child website, so it might appear on there sometime again.

They are so fun to make due to the way the pattern was designed, the bottom part is knitted in the round, then when you increase for the arms, the font and back are knitted on straight needles.  The trunk is knit separately, but the way it is integrated is so clever (with six or seven stitches kept live that are then knitted into the face).

I love adding the eyes, as it brings them to life, and gives them a little character! :)




Knitting for Operation Christmas Child is ideal for beginners as the projects are small but still interesting.  Knitting is my ideal spoonie friendly activity.

I've made two ore of these, but they have already been sent off.  The deadline for sending off shoe boxes is almost here, you can now track your shoebox to see where it ends up, which is quite exciting!

What do you do for fun?



Tuesday 4 November 2014

A month in the life

I've been back at uni for a bit more than a moth now and thought this would be an ideal time to  reflect on the term so far.  I have wanted to keep a record of my health and daily activities for a while now, and thought it would double up as a sort of "a month in the life" post.  I hope you like it.  I feel the need to say that this is probably a worse month health-wise than normal, but I'm not sure that's true.  I look on the bright side and often forget the bad things that happen, this is another good reason to keep a record of the things that I get up to.


Freshers week
Freshers week was a bit of a quiet one, I tried to lay low as I had a cough since mid August that was taking a while to clear up.  This meant I had to cancel a few of my plans to help out with welcoming freshers which was a bit annoying.  But it was nice to see old friends again and get things sorted in my new room. 

My friends also threw me a surprise birthday dinner party!  I had been invited round to diner to a friends house but when I got there four other friends were there too!  I felt very special.  I'm a bit awkward to cook for as I am intolerant to wheat, so it was especially nice to have someone make the effort to cook for me.  We had risotto stuffed peppers and pita bread/wraps with baked mango and black beans.  Then one of my friends did a make your own ice cream parlour for desert with chocolate ice cream and a range of sweets and chocolate to add to it.  I which I took photos! 


I also did some batch cooking to fill my freezer, for those not-so-good days that I knew I would be having in the near future.


I spent my first weekend back home, I wanted to be with my brother as he made the move to Southampton to start uni.  It was a difficult decision to make as to whether I should go due to me being under the weather and about to start term in a few days time.  I actually tried to cancel the day before, but luckily no one was in when I phoned and I thought better of it before calling back again.

When we got there we all went up to see my brothers room which is very nice!  I then had the job of waiting at the bottom of the stairs by his stuff, while the rest of the family carried it up the two flights of stairs into his room and carted (literally the university provided carts!) boxes from the car.  It was nice to have a job to do, I felt useful!  Once all of his stuff had been moved, I went with my Dad and sister to her student house (she's also at Southampton uni) where I was able to lie on my sisters bed.  Dad put up some shelves and my sister unpacked a few things that we had brought up for her.  It was lucky to be able to do this as I wouldn't have been able to go otherwise, there wasn't anywhere for me to go in my brothers flat, and I would have been in the way resting there.   Once Mum and my brother had finished unpacking, we all went back say our goodbyes at his flat.

It was really special for me to be able to do this, we have all always been there for each other's moving day for the first year of university! I didn't want him to be short changed  just because he is the youngest.  He has done most of the leg work the two times I have moved into uni!



1st week of term
The first week of term was good, but then ended badly.  We didn't have a full timetable, and half of the lectures were introductory, so there was very little work!  I still had my cough so wasn't feeling my best, I had started another course of antibiotics to try and clear it up.  I was able to attended everything that I should have (or at least I think I did) and everything was running more or less smoothly.  

Friday was when it all went wrong.  I had a doctors appointment in the morning and was diagnosed with what is effectively short term asthma brought on by the irritation of my cough.  I was given a prescription for an inhaler and told that things would clear up.  On the same day I came to the realisation that I am now intolerant to oats (as well as wheat).  I had been getting bad tummy aces for a while (and had begun to suspect that they were related to eating oats).  These pains had been getting steadily worse, but I couldn't be sure what was to blame.  That morning I had a bowl of granola and by noon I was in excruciating pain.  I found it hard to sit still during my lecture, all I could think about was going home, going to bed and taking some painkillers.  I hardly ever eat oats, this is why it has taken me so long to work this one out. 

The weekend was very quiet, I spent most of Saturday in bed.



2nd week of term
The second week of term was not my best week.  

On Monday there was a timetabling error and I missed a lecture that I hadn't known about.  That afternoon I had a lab session that went on just a bit too log.  The cold lab air and chemical fumes made my asthma play up, and walking too and from campus each day was beginning to take it's toll on my legs, I found it difficult staying on my feet in the lab.
 I was very unwell on Tuesday and Wednesday and wasn't able to go to uni.  (I spent most of my time in bed.)

My Dad popped round on Wednesday to lend my my parents lap top as I had lost my laptop charger and wasn't able to do any work due to the fact that my battery had died and I was't able to get out of the flat. 


More on my difficulties walking,  the main theme for this week was being unable to get out of the flat.  Exeter is a very hilly city and although I only live just outside of campus, the transition from living on site to in the city had been a tough one.  There are buses that run however I was trying to avoid the cold as it exacerbates my asthma.  It can be very energy consuming waiting around in the could (and possibly rain) for an unspecified amount of time. The week before I had spent a very long time waiting for a bus in the rain, which lead to near exhaustion, and possibly partly why I lost my laptop cable.

To end the week I was invited to a Macmillan coffee morning/tea party which was lovely!   The house was beautiful and I had a really lovely time meeting new people including two girls from my course!  It was a lovely spoonie friendly activity! :)



3rd week of term
This week I had another practical session on Monday afternoon, I decided to leave part way through in order to pace myself and not over-do it at the start of the week.  I also started having talks about deferring one of my modules until the summer re-sit period this would give me one day off in the middle of each week.  

I decided not to go in on Wednesday as I was only going to miss one lecture and thought it was better to economise on energy.  I was  grateful to have a very productive work session in the afternoon. 

I was still struggling to breath on Thursday, so went to the doctor, I was prescribed a reliever inhaler and steroids.  The doctor told me to take it very easy and that I mustn't push myself to go to lectures.  

At the weekend I was invited to a friend's tea party.  In the end I wasn't well enough to go.  I do feel very lucky to have lovely friends who include me in their plans though.  Even when I'm not well enough to go to things a lot of the time.  This term they have been particularly amazing!



I have noticed that the way I deal with every day life is gradually changing and that other people are naturally responding to this.  I am getting better at adapting my plans to fit with my health, rather than just cancelling altogether when I don't have the energy to do something.  This means that I am able to do more and get less payback.  I am grateful for everything that I have been able to do so far this term, and for the fact that I am able to study.



My brother's uni moving day.