Wednesday 3 December 2014

What is M.E? Confusion with terminology

This is a post that I have been putting off writing because although I have had M.E. for 7 years, I still feel unquantified to explain what it is.  I have decided to do a series of posts explaining M.E. all with the label "What is M.E?", you can find my labels on the right of the screen mid way down (excluding mobiles I'm afraid).  I have also added my post Spoonie? to this list.

The most commonly used name is Myalgic Encephalomyelitis:
Myalgic means muscle aches or pains
Encephalomyelitis means inflammation of the brain and spinal cord

However the name Myalgic Encephalopathy is also used:
Encephalopathy means a condition that affects brain function.

Although Myalgic Encephalomyelitis is more commonly used and is the name that I have used on this blog, I actually prefer the term Myalgic Encephalopathy, as I think that it describes my condition better.  A lot of people now consider this to be the more accurate name, I should probably start using it!

The term CFS is also used meaning Chronic Fatigue Syndrome:
Some people considerer CFS and M.E. to be the same thing, whereas others think that they are mutually exclusive.  The problem is that the term Chronic Fatigue Syndrome implies that only tiredness is a symptom, whereas the condition M.E. has a long list of symptoms.  (I will write more about these in a future post.)  I have only referred to myself as having M.E., because it is the name that I personally identify with.  However I have used the term CFS at times when describing the illness more generally, because I know that some people understand it better.


I couldn't write this post without referring to the funniest thing I have seen regarding the terminology of this illness.  A few years ago, on M.E. awareness day, as usual many of my M.E. friends were posting about the condition on social media.  One friend posted "today is ME awareness day" as his facbook status.  He got lots of comments from people who obviously weren't aware of his condition, saying things like "yes were all perfectly aware of you" and "what's all this self promotion?"  It lead to some quite awkward follow up comments!


Have you had any awkward incidences regarding medical terms?


Image source unknown

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.



Friday 31 October 2014

To go part time or not...

This question has been looming over me for several moths now.  I have recently had to decide whether to go part time this year or not, here is the decision process that I have been through, and ultimately the decision made.


I know that I am not (really) well enough to do my course.  My health declined in my firs year, and is likely to do the same this year and the next unless something changes.  This is not a sustainable pattern!

If I were to go part time it would make it much less likely for my grades to be effected by my health.  I don't want to look back on my degree knowing that I could have done better if I only I had given myself more time.  (I've spoken about the way that my grades affect my health here.)

Degrees cost a lot of money and take a lot of time, this is probably the final part of my education that I will ever do, I must do it right.



At the start of my second year I turned 22, most of my school friends have graduated in the summer just gone.  If I choose to go part time now it will make my degree five years long and I will be nearly 26 by the time I graduate.

When I was at 6th form college I was a part time student, which was fine for the first two years alongside my school friends.  Once they had left I stayed behind and started making friends with the newcomers who were two school years below me.  I really noticed the age difference and struggled to cope, I wasn't very happy at all.   I don't want to knowingly put myself through the same experience at university.

Recently I had an appointment with a student advisor at my university.  She told me that all students are funded for four years  by Student Finance, in case of a resit year or study abroad.  A fifth year of study is not automatically funded.  If I go part time on medical grounds I will have a good chance of getting funding, but can only apply a few months before starting my fifth year.  This means that if I go part time now, I won't know if I will be fully funded until three years time! The advisor also couldn't guarantee how much funding I would get if my request is accepted.  University fees would be halved for any years that I do part time, but accommodation and living costs etc would obviously be the same as normal.  This is a big risk to take.  I was advised very strongly towards doing a four year degree if at all possible.

May of my friends are taking a year out, so will be at university for a total of 4 years, meaning there will be plenty of people around that I know I'm my fourth year, but not my fifth.


Decision:

You guessed it, I have decided to stick it out this year as a full time student (or at least close to that with some exams over the summer), and then go part time next year to make my degree programme a total of 4 years!





Friday 24 October 2014

London, Part 2

Oh dear, it's taken me a while to get the second half of this post up!  Its because I've been unwell, but also because I found it difficult to write.  There are some negative comments in here, but I wanted to be honest!  On the whole I thoroughly enjoyed London, but there were some things that were not very M.E. friendly, and I wanted to be real about that.

Find part 1 here for more about what I got up to when I went to London!  

This part is going to be about the attractions that we went to such as shops, museums and galleries.

One of the first things on or list was to visit the Tower of London.  I wasn't in a wheelchair so could technically go any where I wanted.  However there were lots of steps and uneven paths and very few places to sit down.  I'm glad to say I've been, but I wouldn't go again due to the lack of accesability.  I'm sure they have done there best to make things as easy as possible, there is a limit to what they can do without ruining the integrity of the building!  It was very busy and a lot of the buildings were hot and noisy.  Perhaps it is somewhere to visit when it is not prime holiday season!  

My grandpa had lent us his fold away stool which was really useful for queues, I'm ok walking on my feet but am terrible at standing around.  It came in really handy for queuing at places like the Tower of London.  Even for bus stops and at the tube station!

The London eye was obviously a must, we bought fast track ticket, which saved a lot of queuing time and did the 4D experience before hand which was free and I would recommend.  It really set the scene and was a nice little extra, I am surprised at how much it stayed with me afterwards.  It was a good thing to do at the end of the holiday because we were able to recognise the different buildings that we had been too.  I would love to do it at night in the future!  I took the fold away stool with me, and was glad of it!  There weren't enough seats for everyone, and I was able to move the stool around the pod to get different views.  It was great to be able to sit right up close next to the glass!

We went to a few of the old traditional shops like Harrods, Liberties, Selfridges and Hamleys.  I would love to go back to Harrods ...it mad me feel fancy!  There is so much to see there that you could stay for hours and still not be done!  If I get the chance to go again, I would love to spend more time in the food hall and visit the haberdashery.

I was impressed with the museums and art galleries, most of which had wheelchairs to borrow and good accessibility.  It would have been very difficult to take a wheelchair on the bus and tube, so this was a great option.  I did have a spot of trouble in the Science Museum (see below) but for a different person on a different day it could have been fine!   It so great that all of these things are free, for a city that is famous for being expensive we didn't spend very much!

As I study biochemistry I had a special interest in the Science Museum.  The highlight for me was seeing the reconstruction of the first DNA model.  We had studied how this was made in my first year!  Unfortunately we didn't stay long though as the accessibility really wasn't good!  They persuaded me to use one of there extra special wheelchairs, as opposed to the normal ones that they had.  Quite frankly it ruined the trip!  I'm sure those wheelchairs are really good for some people, but we really didn't get on with mine!  There was no suspension and it was really difficult for whoever was pushing me to steer.  For a several thousand pound chair this isn't acceptable!  I think they were designed for people who are self-propelling.  ...but no one had told us that!  The lift system was also a problem, not all of the floors can be reached by all lifts.  Dad ad I spent a very long time trying to get to one floor in particular, in the end we had to go down to the ground floor and almost the entire length of the building just to use another lift so we could get to the floor we wanted.  There were no staff on hand to help, and the signs were badly labeled.  It was also very hot and noisy on the upper floors.  We ended up leaving to go to the V&A instead!

The V&A was my favourite museum!  Perhaps because we hadn't planned to go, so it benefited from having the element of surprise.  I was quite tired by this point, so only properly looked at the fashion section.  We skimmed through some of the other sections too and had a look of the architecture of the building which was amazing.  The best bit by far was discovering the courtyard (that I now know to be the John Madejski Garden).  It has a large shallow pool surrounded by grass followed by pavement.  On the day that we were there it was really hot and there were children running around in there swimming things and playing in the pool.  I really enjoyed sitting around the edge with my Mum eating snacks.  There was a little kiosk and lots of tables and chairs, we even found a spot of shade.  The courtyard had a lovely atmosphere, and it felt like we had found a mini oasis in the middle of London!  

We did so many other things in London, I have written about the bits that stood out for both the right and wrong reasons.  I was surprised at how easy it was to manage form an energy point of view, and how much there was to do for free!  All of the credit goes to my Dad, he planed everything and did a really good job!  I never would have expected to have such an enjoyable time in a big city whilst so unwell.  It would be impossible to see everything in four days, but I now feel that I have done London!  

I hope you all had lovely summers too, now on to autumn! 




Saturday 4 October 2014

Perspective

This post was written in early September and for one reason or another I didn't get around to posting it at the time.  I feel that it is still relevant though, so here it is!

I have realised recently that I have lost my perspective on my health.  About three years into my illness I was really good at taking the small victories, and being happy about my achievements.

Since being at university I have been surrounded by people who (with a few exceptions) are healthy.  I haven't been spending as much time with the on line M.E. community due to uni work, and it is really taking it's toll.  People at uni haven't known me for very long and (through no fault of their own) don't have a very good gauge of my health or what is "good" for me, nor how far I have come (my fault for not telling them enough about it).

In this environment I have begun to compare my self to others and expect more of myself than is realistic.  I have enjoyed the anonymity of being at university, as it is nice to get the feeling of escaping for a while.  But being healthy or "normal" is not a reality, I will always come crashing back down to earth.  

Having recently received my end of year grades for first year (despite having to take one and a half modules or three exams over the summer) I have done well; grades that any healthy person would be happy with.  But I was not... although I was not disappointed with my results, they were what I expected.  I did not feel any satisfaction in getting them.  They just were.   I always think of what I could have got if I was healthy, not how I did despite being ill.  At every round-up of grades at the end of term, I look for the assessments that I could have done better in "if it wasn't for my M.E", and I discount them form my overall grade creating my new "healthy average".   

In my mind its the only grade I deserve, and I wouldn't be happy unless I couldn't pick out any assessments where I feel my performance was affected by my health.  At the most, my ill grades have been four whole grade boundaries below my "healthy average" which is a non-existent benchmark of course.  So as I'm sure you can imagine these lower grades really do affect my overall grade.

In my mind every low grade is an off day, a blip in my otherwise normal life.  But looking back over the year, there have been quite a few blips, and my life doesn't seem as normal as it is in my head.  You could almost say that these days are enough to constitute a chronic illness... oh wait I do have one of those. 




Thursday 25 September 2014

London, Part 1

This summer my family took a trip to London, and I thought I would share my experience form an M.E. point of view and otherwise!

I have split this post into two:
-Part 1 travel and sight seeing
-Part 2 attractions e.g. shops, museums and galleries

I had never been to London for more than a day before, so wasn't really sure what to expect.  I knew that the days would be long, and that there would be a lot of travelling.  But apart from that, I didn't know what was in store! 

The trip was planed with my health in mind.  So we had two days in London with one rest day, and then two more days in London.  We stayed at my Auntie's house in Hampshire and drove to the Wimbledon area each day.  All of the extra travelling made the days longer, but staying with family allowed us to return to a comfy sofa and familiar place each evening, which made the holiday more relaxing and enjoyable.

 We spent a lot of time on public transport travelling around the city taking it all in.  For me this was reasonably low energy and much easier than walking or driving from A to B in a city we didn't know.  I was able to use my (free) disabled bus pass on the London buses, which was such a help.  The service was really good and easy to understand, I especially liked the friendly bus conductors that they have now added to the back of the buses.  It felt very proper, a real step back in time to 'old London'.  We hardly had to wait, and views were great from the top deck.  There was no need to plan around bus times for short journeys.  I can see myself going on a little holiday on my own to London were I mainly travel by bus!  

I also had a go on the Boris Bikes!  I felt like I had an entourage with my dad in front and brother beside/behind me to make sure I was ok.  I had no idea how I would cope, but it was actually fine ....apart from starting!  I got of to a bit of a wobbly start, which didn't seem like a good sign.  But once I got going it was fine.  The best bit was cycling around the front of Buckingham Palace and down the Mall, it was pretty flat and beautiful.  I felt like I was in a film!  It started raining torrentially half way down the Mall and we had to shelter.  But it was fun cycling along in the rain for a bit.  It was pretty much the only rain we had for the whole trip.  Typical! 

We used the Thames Clipper (boat) to travel from the O2 arena to the London Eye.  It was a great low energy activity and there was even a Costa on board!  I really felt like I was travelling in style with my mocha in hand, sat in the warm and dry with amazing views.  Imagine if that was your daily commute! To get to the Clipper we used the new cable cars, a bit of a wacky choice, but a fun experience all together!  The ride was really smooth and spoonie friendly; it felt more like a gentle fairground ride than anything else! Another amazing way to see London!

From the sight seeing point of view something that really struck me was Imperial collage.  As a science student, I have heard a lot about Imperial and know of people who go/have applied there.  I had never realised how amazing it is just sat there.  I couldn't help thinking what must it be like if this was where I went every day.  Obviously for me it wouldn't be the right choice.  But wow all the same, good on the people who actually go there!  

There was so much to see, and we were lucky enough to have nice weather, which made it easier to just sit and take in the views at places like Kensington Gardens and Parliament Square.  Spending so much time on transport made it one of the most M.E. friendly holidays that I've had in years. Who would have thought that the busiest city in England would be so assessable!  I would go back at the drop of a hat!

I didn't take any pictures of my own, so here a photo of what I bought in Harrods.  There are plenty of pictures of London all over the internet!





Wednesday 10 September 2014

Handmade wardrobe

For those of you who don't know, in the knitting/dressmaking blogosphere a handmade wardrobe is a collection of posts about handmade clothes made by the blogger.  I have mentioned previously on here that I took up knitting a few years to replace the hobbies that I can no longer do since becoming unwell.

This is the first instalment of my handmade wardrobe!  The cardigan was finished back in February and it was my first whole garment.  There was no where to photograph it at uni, hence the timing of this post.  I have always wanted to keep a record of my creations, and wouldn't want something like uni to get in the way, so here it is!

Thanks to my brother for taking these pictures.

The pattern was bought in a wool shop called Knit in Minehead, and was found in the second hand/vintage section.  I paid less than £2 for it, bargain!  Sadly this shop has now closed!  I bought the wool at Buy & Save cheaply, it is not top quality at all, but I didn't want to spend a lot of money on my first big project.  It took me 9 months to make in total, as I made so many mistakes.  All rookie errors, I even started knitting the wrong size!

I just love old patterns!

I'm really pleased with how this turned out and I wear it a lot already.  I am looking forward to the winter months when I will be able to wear it more!

Saturday 6 September 2014

Reflections on moving to Exeter

When I moved area to start university I didn't think much about how I would tell people about my health.  I had thought about how I might approach the subject with my lectures, but that was about it.  I had assumed that it would just sort of come up, and that I would casually explain, and then move on.  But it was not that simple.  

Until recently I hadn't appreciated the fact that most people who know me from my home town have known me, or known of me since before I was ill.  There is so much information that automatically comes with knowing a person through a time like that.  They know what I was like before, and how things have changed for me.  If I meet someone new in my home town they are generally surrounded by plenty of people who are able to fill them in.  I have had so much of the work done for me in the past, and didn't even know it!

When I started university no one knew me, or anything about me.  There was a lot of information to get across to a lot of people, all of whom required the knowledge for different reasons.  Some just needed to be told to explain things socially; but others must know because it affects me and will inevitably affect them e.g. for lab projects and things.  I have handled my explanations with varying levels of success...  when they have gone well, I wonder what's all the fuss?  But when they haven't, things can seem impossible!  Close friends allow time and space for explanation, but others are not as invested and can be difficult to approach.

For the first few weeks I didn't feel a noticeable difference between myself and others, there were only a few instances where I had to explain why I couldn't do something.  So I didn't end up saying much.  I was feeling really well having had a year off to focus on my M.E.  It is hard to know what to say when there isn't actually anything to explain!  By the end of my gap year I had started to tell people that I used to have M.E. (wishful thinking).  

Having never done this before, I have found that people expect you to know what to say, but it was not the case.  At the start of the year there was no way of knowing how my M.E. would affect me throughout my degree, and I still don't know what the future holds.  As the year has progressed my symptoms have worsened and I have tried my best to understand and explain them as best as possible.

A lot of things that I have written about in this post may seem obvious, however they are things that I was just not prepared for!  A year on from moving to Exeter I have learnt a lot, I have learnt about the aspects of my health that I find more challenging to discuss, and am working on how to improve.  Not everyone is as practised at reading in between the lines as I had grown accustomed to at home.  Nor should they need to be.  I hope that I am getting better at talking about my M.E, now that I've had a bit of practise talking to people from scratch.    




Monday 11 August 2014

How to have an M.E. gathering

I love meeting up with my M.E. friends and have been to gatherings large and small.  Here is a list of things to consider when planning a spoonfest!

·        Take regular breaks, plan when to stop and rest at the begging and stick to it!

·        If not everyone wants to rest each time, that is ok but make sure you work around everyone's base line.

·        Think about numbers
-Too many may be too tiring and loud.  
-If you want to have a large gathering over-invite, expect people to drop out last minute.
-Three people works really well, one person can be resting while the other two chat.

·        If you are under age, or will be meeting people who are under age, think about safety make sure that there is a trusted adult near buy.

·        If you are meeting someone you have not met before, bring a friend and meet in a public place.

·        Think about length of time, if people are travelling long distances it is not worth meeting for only a short time, but a meeting that is too long will cause unplanned payback.

·        Think about dietary requirements, people may have intolerances.

·        Think about accessibility 
-Allow for walking sticks and wheelchairs.
-Provide a separate room for resting
-Make sure the entrances to buildings are accessible and that there is a downstairs toilets. 
-How will people get there? Is there a train station near buy, parking?



Me and Sarah, my spoonie friend



Sunday 27 July 2014

DIY chair

So recently I reupholstered a chair, and I thought it would be fun to blog about it!  I don't normally do this sort of thing, but I do do a lot of DIY crafty stuff.  I am hoping to post more DIY projects in the future.

This is my chair...



It was from Argos about seven years ago and was very cheap.  The framework is completely fine, but the plastic covering had begun to peel off.  It seems a shame to throw an otherwise good chair away, so I thought why not give upholstery a bash?  There was very little to loose as it was looking pretty sorry for itself and very cheap in the first place!

The first thing I did was to look through my Mum's fabric stash.  As I am a student and generally moving from house to house each year, I wasn't bothered about finding fabric to fit with any colour scheme or room in particular.  My main concern was to find a durable fabric that I vaguely liked and went with the chair. Over the years of doing DIY projects I have learnt to be open minded about pattern, what looks good on it's own often doesn't look good in the finished project, and something that seems horrendous may go really well.

There were two corduroy options that I liked, but thought they might be uncomfortable to sit on, and perhaps cling to jeans.  There was also some left over curtain fabric that I liked, but I eventually settled on some upholstery fabric that Mum had been given for free in the past.  It was only slightly bigger than what I needed, and goes well with the silver of the chair so I thought why not!


Tools required:

-Screwdriver
-Scissors
-Staple gun
-Pliers to pull out staples that do not lie flat
-Some sort of tool for making holes in fabric (I used a seam ripper)


Materials used
-Fabric


Basic steps:
  1. Unscrewed the seat and back rest of chair to check that everything that needs to come off will do, and can be put back.  
  2. Remove plastic covering, smooth excess foam round to the back secure with staples.
  3. Cut fabric to size (I made a minor error here by cutting the fabric the wrong way round with the pattern going horizontal rather than vertical, but it worked out ok as I had enough excess to switch it!) 
  4. Staple fabric to chair pulling out any staples that do not lie flat, this was tricky with the back rest as it is completely curved, so it was difficult to get it lying flat in order to staple.
  5. Ensure foam and fabric are lying flat on underside of chair and attach panel, make holes for screws.
  6. Clean framework of chair and assemble pieces.




The fabric is definitely not my usual style but as I say, something I would have usually liked may not have worked.  I like how the fabric goes with the colour of the chair.  I could have repainted the framework, but that would have taken a lot of time and extra energy that I really don't have.

Saturday 12 July 2014

Where have I been?

So in late May I had the last exams of my first year at university. I often find that I am unwell during the exam period. For years I managed to convince myself that I was exam phobic. But recently it hit me, it really hit me! Now I am able to give myself a break! Exams are at the end of term, or after a short short break and at the start of a new term. This is when I am at my worst and least able to function. I have released that I am bound to be ill at this time. There is nothing more tiring to me than stress as I suffer much more cognitively than I do physically. A pre-illness coping mechanism for this would have been to get out and about, but this is very difficult when short on energy, often impossible.

Anyway as I'm sure you can guess by now, I was unwell for yet another exam season. I have spent most of June recovering, resting and working on summer uni work. My exams went like this: The first was fine, and despite being under the weather I manned to get a good grade. However I had underestimated how tiring this would be for me, and just a few hours out of the flat left me in bed for days.  I was not able to revise for my second exam and scraped a pass!  I missed the last exam as I was so unwell. We have a re-sit period in August and I will be sitting my third exam (cells) then.  I was very prepared for cells, so it shouldn't be to difficult for me to revise it again!

I will also be sitting two more exams in August, both for microbiology.  During my second term I was't able to keep up with all of the work and lab sessions, so decided to drop a module. I chose to drop microbiology because all the lectures were recorded and it was easy to drop from a coursework point of view. I have worked my way through half of the lectures, and it is going well. I will be taking both the midterm and the end of term exams in the same week.

Since coming home I have started a few craft projects.  Originally I set up the "Jenny Helen Makes..." blog to write about the crafts I make and to provide a space where I don't have to focus on my M.E.  But I have realised that this is too much to keep up with and doesn't really make any sense anyway. After all my spoonie life involves everything I do including the hobbies I have to suit my health.  I have decided to delete "Jenny Helen Makes..." and my first (and only post)!

My microbiology notes

Wednesday 21 May 2014

This is ME blog chain

I thought I would do Louise Bibby's This is M.E. blog chain. It is a little late, but I thought it would be a good way to introduce myself, and after all it is still M.E. awareness month!


What is your name & how long have you had ME / CFS?

My name is Jenny, I go by Jenny Helen a lot on the internet because I find that including my middle name makes it much more likely that the username (or blog title) that I want to use will be available.

I first crashed at the beginning of November in 2007, but I had been feeling increasingly unwell for several months, how much of it was a viral infection (I later tested positive for Glandular fever) and how much of it was M.E. is difficult to say, I don't really think there is a point where one starts and he other begins. I remember feeling 'odd' in May 2007, and in my mind that is when it all began, so I suppose 7 years.


Where do you live?

In the south west of England.



Age 

21



Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):

  1. In the last year and a half I have become a knitter, I have now learn to knit and made myself two jumpers! 
  2. I enjoy cooking and spending time with others, I imagine my 'future self' to be someone who has large diner parties and invites people round for food often. 
  3. I really enjoyed school and could never pick a favourite subject, I knew which my three least favourite subjects were, one of which was biology.  ...I now study biochemistry!
  4. I am learning to dressmake! My mum is gradually teaching me during my uni holidays with old fabric and a 1970's sewing machine! I have bought my first pattern and I am half way through my first project. Sewing is really rewarding and very satisfying but the potential for disaster is always there and it dose require a lot of patients. 
  5. Most people in my life don't know that I am a blogger! It is not something I have shared with them yet!


Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:

  1. Before having M.E. I played guitar for many years, when I became ill it was one of the last things that I gave up as I slowly decreased my commitments. Even though I have been recovering for many years and my health has improved a lot over the years, I still do not have enough energy to play. I dabble every now an then, but I always get pain after a few minutes and overall it is more upsetting to try and play. If I am around guitarists it is always bitter sweet. 
  2. Often I suffer from brain fog to the point at which I can't read, this can happen as much as once a week. It can be embarrassing in public especially when asked to read, it is very difficult to say "no sorry I can't read right now" when your an adult! 
  3. I don't know where I would be without my sister. When I became ill with ME my 'real life' friends slowly faded away, I began to sit with my sister at college, eventually her friends became my friends. I am eternally grateful to her for allowing me to do this (not everyone would) and to her friends for their acceptance. 
  4. My brother is a trooper! Every day that I could manage for over a year he took me for a walk as part of my pacing, this is something I cannot repay him for. 
  5. No matter how many hobbies I try nothing will fill that sports shaped hole. My heart aches to be on a rainy hockey pitch.


What one thing do you think most people wouldn't know about living with ME / CFS that you’d like them to know?

You don't get used to being ill. It is very hard to define what 'ill' feels like but I'm sure that most people can relate to that feeling you get once every year or so when you wake up in the morning and you know you are ill. I'm not talking about a cold that you can push through and get on with the rest of your day, I'm talking about an extremely bad cold or the flu. That groggy, heavy, sluggish feeling that makes you reach for your phone to call in sick as soon as you wake up in the morning because your body is screaming out to you that today you shouldn't get out of bed. For the first 3 years of my illness I would feel like this every day, every day feels like a 'sick day'. It doesn't get easier to deal with you just get better at hiding it.


What is the most frustrating aspect for you of living with ME / CFS?

The lack of communication! Unfortunately our society is not currently equipped to deal with invisible illnesses very well. I constantly find that when I'm in a social situation where I feel I need to bring up my health. There is something that sort of stops me just before I open my mouth, my sort of 'social acceptability o-meter'. This is based on past experience where talking about M.E. has lead to rooms being silenced forcing everyone to feel very uncomfortable! This can silence me. I am learning to push through this barrier and I am getting better at it. But it frustrates me that the burden falls on us, the sick ones to make the right choice, and it pains me that that the choice is so difficult to make.


Anything else you’d like to say before finishing?

I firmly believe that when a person becomes unwell both that person and their friends want to maintain the friendship equally as badly. Unfortunately this doesn't always happen, it is often no ones fault, its just that people often aren't very well equipped to deal with the new situation.

Here is my list of top tips for dealing with people with M.E.

-Have complete acceptance, do not question or doubt.
-Try to be as flexible as possible, if they cancel it is more than likely that they are devastated about it.
-Have the insight that they are probably feeling much worse than they are letting on almost all of the time.
-Do not forget the few times they do share with you how they are feeling.


Image source

Sunday 18 May 2014

Spoonie?

What is a Spoonie?  Or should I say who is a Spoonie?

The term spoonie was invented by Christine Miserandino from ButYouDon'tLookSick.com, she is a sufferer of Lupus who invented The Spoon Theory one day when trying to explain to her friend what it is like to suffer from a chronic illness.

The Spoon Theory explains how someone with a chronic illness has a limited amount of energy "spoons", and that once all the "spoons" are gone for each day they are gone.  If you do more activity than you should, you are stealing "spoons" from the next day.  Some days a chronically ill person will have less "spoons" available to them than others due to the fluctuation of the illness, a day like this could be refereed to as a "low spoon day".  If you over do it, you could say "I'm borrowing spoons".

The Spoon Theory has now spread world wide, and is used by people with all types of invisible chronic illness to describe how their condition affects them.

Spoonie has become a name for someone who identify with the Spoon Theory, it is self adopted.


Photography by Sarah H



Fun things to do when you have M.E. Part 1

When you have a chronic illness it can be difficult to know how to teat yourself. Here is list of some of the things that I do for fun!



Go for a car ride

If you have a family member who can take you out for a scenic car ride it can really lift the spirits to see something new. I love going back to the same places and watching the seasons change. It is also good to go to places where you are likely to see nature or animals.

Whilst looking for an appropriate photo for this post I found the following picture.  A few years ago my parents took me out for a drive over the hills to try and find some wild horses. We stopped nearby and gradually they came over. One got a bit too close for comfort though and started nibbling on the windscreen wiper! This was quite a shocking experience for me trapped in the back seat!



Always have a camera to hand!




Write a letter

They are great to receive, and if you write one you might get one back!  This can be especially good for people who struggle with screen glare.  It also allows you to take as many breaks as you want without disturbing the other person unlike phoning and skyping.  You can take as long as you want writing them too, and no one will know!  There is something very therapeutic about spending time poring over a heart felt letter, it is much more satisfying than email!  You have the opportunity to show a lot of care and attention, to really make the other person feel valued.  A few of my friendships have really benefited from letter writing and some even began that way!  Receiving a surprise letter could make a person's week, it is amazing to know that you can bring another person such joy!


Papercase stationary




Watch a T.V. show film with friends or family

I have watched a few T.V. series with friends; it's a really good way of making sure you see each other.  As an unwell person life can get quite mundane sometimes, and it can be difficult to find new things to discuss.  For me something as simple as this can really make the difference in a friendship.  Sometimes it's the small things that mean the most.

Many of my birthday parties over the years have been film evenings.  I usually invite about 5-10 people and order in food.  For my 21st birthday party we watched Dan in Real Life and ate pizza!



Image source


Have a pamper session

Do your hair, or get someone else to do it for you, paint your nails, have a massage, use a foot spar, use a face mask. The opportunities are endless! All of theses things are good bonding time with whoever your doing it with.  If your doing it on our own, it is top quality 'me time'.

When I meet up with my M.E. friends there are almost always face masks involved. 



Photography by Sarah H 




There are loads of other ways to treat yourself when you have a chronic illness, I have called this part 1.  Looking back on my M.E. journey these things have brought me a lot of joy!  Perhaps you do some of these things too.