Guest post by Kat: How M.E. has changed my life

I asked Kat to write a blog post for M.E. awareness month on the impact that M.E. has had on her life. The aim of this was to show that M.E. can affect anyone, and can strike at any age.  Kat and I have had a very different life experience however we are united by the same symptoms.  Here is what she has written. 

I came down with M.E. when I was 13. Unfortunately I was told by a paediatrician to keep pushing myself until I was back to normal. It was only later we found out that his advice was completely the opposite of what I should have done and I very quickly spiralled downhill until  I was practically bedbound.  Fourteen years later my health has improved significantly, but I still struggle with M.E. on a daily basis.  It’s changed my life in so many ways.  These are just a few:

Appreciating the Little Things

When I was first ill the most energetic thing I was capable of was brushing my teeth. Sometimes (even now) I'm too exhausted to watch TV. It means that now I'm well enough to wash my hair and do something else on the same day that that’s a really big deal. When I have energy I make the most of it and spend it on something worthwhile like my Open University Degree, volunteering for the Association of Young People with M.E. or doing things with friends and family. However much energy you've got, make the most of it.

Real Friends

On a good day I could send one text message. That was it. As you can imagine, that meant I didn't have much of a social life. Sadly many people with M.E. become isolated and lose most, if not all, of their friends. Unfortunately I was one of them. I found that out of sight was out of mind and that if I didn't contact people first they almost never contacted me. People stopped inviting me to things because they assumed I wouldn't be well enough to go. They were probably right, but it was painful that they didn't even bother to ask and never organised anything they knew that I would be able to join in with. Although I lost many of my best friends, I did find others who were more understanding and supportive. I'm still in touch with them and I think I always will be.

Powers of Organisation

People with M.E. often have super-human powers of organisation. They have to. If we want to do something or go out it has to be planned with military precision so it takes as little energy as possible. If I have an essay due in I can’t pull an all-nighter and get it all done at the last minute. I have to start over a week in advance to make sure I can get it in on time. If you want something organised, then ask someone with M.E.!

Opportunities

My brother went to Cambridge University. I was gutted that I not only didn't get to go to Cambridge, but I didn't get to go away to any university at all. However, as one door closes another door opens. I'm now studying a Degree in Psychology with the Open University which I absolutely love. I would never have studied Psychology if I hadn't got M.E. as it wasn't offered by my school. After I had to take a year out of education because of my M.E. I went to a local college which did offer Psychology. I've also been volunteering for the Association of Young People with M.E. for over a decade. I've made so many new friends through AYME and really enjoyed volunteering with them. I was even nominated for a Young Achievers’ Award because of it.  It’s difficult to imagine my life without AYME now.

There are a lot of downsides to M.E. and I wouldn't wish it on my worst enemy. It’s frustrating dealing with people who just don’t understand and having to put up with strangers telling you to try some weird treatment. On bad days it makes you want to cry your eyes out and even on the good days you can’t do half as much as you want to as you just don’t have the energy. There are good points though and as my health improves I’m certainly making the most of it.

Please help raise awareness of M.E. by taking a selfie holding up the words #NowYouSeeME and text ‘AYME01’ followed by your donation to 70070. Or you can donate via AYME’s website (www.ayme.org.uk).

Thank you Jenny for inviting me to do this guest blog post J

My first year of blogging

So it's my blogiversary.  I couldn't let this day pass without giving it a mention, here's are my thoughts one year in!

I started this blog one year ago with no idea what would happen.  I didn't even know if blogging was something that I could keep up, I entirely expected to give up after 3 weeks and for the whole thing to be just a 'phase'.  However I think that accepting that fact and not worrying where this experience would lead me, weather I would fail (in the eyes of other people) or what other people might think has really freed me.  It's freed me to not worry if I haven't posted anything for over a month because I have had a relapse, it's freed me to not worry if my content is of poor quality, but most of all it has freed me to be myself.

I've defined unique standards for myself, not the ones that we us usually judge other people's online content by, but they are my standards, they are what I care about.  It matters to me that this blog is honest, because so often we see M.E. being misrepresented in the press and so often people with M.E. feel that they do not have a voice.  It matters to me that I am true to myself and do no conform to the blogging 'norms' just to fit in.  This means not doing tag posts just because they are popular, and not wearing makeup in my pictures, because I don't actually war makeup in real life.  I don't have anything against these things, they just aren't me.

When I started this blog, one of my biggest concerns was that if I did last more than 3 weeks I would soon run out of things to talk about.  After all once you have explained the illness and the significant hardships, what else is there to write about?  I couldn't have been more wrong, I think of new things to write about almost every day, and if it wasn't for brain fog preventing me from writing, or half of my ideas coming to me in the middle of the night when I am trying to avoid looking at screens, then I think that there would be a lot more content on here.  Currently there is quite a long list of blog posts almost ready to go up, my biggest issue by far is finding the good-brain days to edit them!

Originally I planned to write two blog posts a month and post them every other Wednesday, I kept half of that up! I am pleased that I have averaged about 2 posts per month, it means a lot to me that I reached my target for the year (this is post number 28).  However I quickly realised that I would not be able to keep to a schedule.  M.E. is an illness that is unpredictable and fluctuates from time to time, just as I have good point in they day - I also have good and bad weeks and months.  So a schedule really doesn't work for me.  I have learnt not to worry about anything like that at all!

I have become attached to the things that I have written, I wouldn't want to loose any of it.  All of the posts are backed up, and most of them take weeks or moths to write.  This is because I write about things that I am trying to work out my feelings on.  The writing process is far more important to me than the result.  Often I find that the finished posts seem very simple in hindsight.  I enjoy being able to look back on my journey and see how far I have come.

Over the past few months I have had comments like "you've said what I wan't to say but can't because I don't have the brain energy to organise my thoughts", "I've learnt so much about M.E. from reading your posts" "I really enjoy reading your blog" and "Thank you for telling me that there are other people out there going through the same thing as me... I thought I was alone, I can really relate to what you are saying".  These comment really mean a lot lot me, although I write for myself.  I deliberately decided to put this on a public platform, as I have benefited from reading what other people have written in the past.  Anna's blog in particular expressed my views during a time where I was too unwell to get my own thoughts together.  I am glad to be able to provide the same experience for other people.

In the future I would like to write more about the illness itself, and the stigma that it is surrounded by, as they are both thighs that I care about, they are also things that do not get talked about enough. They are topics that I find quite confusing to write about, so it will take me a long time to get them written in a way that I am happy with!

I love my blog, and I have found it so rewarding to write.  I have met some really lovely people along the way, it is nice to feel a part of something biger than myself.  I couldn't do this without the blogging community, they keep me going when I am having a not-so-good patch, and inspires me by being better that I am. I like to think that together we are building something special.

Anyway, I hope that you have enjoyed my overview of my first year in blogging, and that you have found it interesting to read about my writing process, and my motives for writing.

M.E. Awareness

As today is international M.E. awareness day, I though that I would share with you some of my favourite awareness videos!

I have had M.E. for 8 years now, and I am so glad that we are beginning to get some good quality videos online.  All off these have been shared in the last few months (with the exception of the Nancy Klimas one), it just shows the progress that the M.E. community have made in recent years! Proud.

Well done if you made it through all of these, I know it as a lot to watch.  Make sue that you like the videos and subscribe to the channels, to show your support!

What not to say to people with chronic illnesses, and what they wish they could say in response

Not only is May M.E. awareness month, but it is also the month for many other chronic illnesses.  So when better to share a blog post on chronic illnesses.  Since taking an active part in the on line chronic illness community, I have learnt that there are a lot of things us sufferers of chronic illnesses have in common.  Here are some of my top statements/scenarios that really get up the noses of people with chronic illnesses, and my ideal response if I was feeling brave and it was considered socially acceptable.

I'm sure that when you start your new job (course or any other life change) you will be much better

By saying this to me you are indicating that you think my chronic condition is clearly psychological. This is not a phase, it's not depression or even hysteria.  It is a real medical condition that unfortunately won't go away for very long time, if ever.  No matter how many life changes I make it will be one of the few things that is constant. 

I know how you feel… I get tired too

I don't know who started the lie that the only symptom of my chronic condition is fatigue, unfortunately it is not, most chronic illnesses include fatigue as one of their many debilitating symptoms.  Now when we say fatigue and you hear "tiredness" there is a problem.  The exhaustion that comes with a chronic illness is nothing like feeling sleepy, it's lethargic and is very achy.

Do you have an official diagnosed allergy?  There is no medical evidence for food intolerances - When the person has given dietary requirements for an event

I do not have an "official" diagnosis, but that doesn't mean that if I eat certain foods they won't make me feel severely unwell.  Every illness and it's treatment were undiscovered at one point.  Just because the doctors don't formally recognise that avoiding certain foods can alleviate some of my symptoms does not mean that the benefits of doing so are all in my head.  There is no cure or long term treatment for my illness, so for now please respect my choice to eat what I want, as its one of the few things that helps me at the moment.  Also, pleas don't uninvite me to your event just because I am difficult to cater for (yes this actually happens)!  I am very sorry for the inconvenience, and am very aware that it's a pain!

It’s so good to see that you are better now!  - When they attend one function looking healthy

Yes I may be out of the house for a few hours and look and sound relatively normal, however this does not mean that I am cured!  My chronic illness means that I will be unwell for ever, or at least several years.  Please stop asking or assuming that I am better.  Note events x,y and z that I was not able to go to due to illness.  I had to save up my energy for weeks/moths before being able to come to this, and afterwards I will experience payback where my symptoms are worse than normal.  I feel dreadful on the inside, even though I may appear healthy, unfortunately you never get a break from chronic illness. Reminding me of my chronic illness, one one of the few days that I am trying to escape from it is distasteful.  

Have you tried this (insert bogus remedy) its only (£600 for 4 sessions) some people get cured from it

I know that this won't work for me (even though I haven't tried it) because if there was a cure for my condition everyone would know about it by now.  I have tried several alternative therapies, and all that happened was that my bank balance decreased.  Once there is an effective treatment for my condition all of the con artists will go away - you'll see.  I know that you are just trying to help though, so I appreciate the sentiment!

At least you don't have (insert random illness) it could be so much worse… 

There are diseases out there that are more deadly than my own, I am grateful that I don't have one of those.  But my disease has no treatment please acknowledge the reality of that.  I can tell that you are trying to be positive, I like positivity.  However this is sweeping things under the rug, which makes me feel belittled and like I'm not being taken seriously.  I don't think that is is fair to pit illnesses up against each other.  Everyone's individual suffering is unique and cannot be compared, nor does it achieve anything by trying to do so!

One day in the future when we have children (we are married or we are old)...

I like to talk about these things form time to time, but please don't talk about it too much.  They may actually be impossible for people with chronic illnesses.  You have to understand that this is a sensitive subject, and it's probably best not to talk about it unless you know that it’s the right time.  Each chronic illness is different, and affects individuals differently.  How someone is feeling about their future will change throughout the course of their illness and often form day to day, it is very difficult to know how someone else feels about these things.

I hope you feel better soon - After the person has had to cancel going to an event

Thank you for reminding me that I will never recover from this illness.  If I tell you that I'm not going to something and give a non-specific health reason, please assume that it is due to my health problems.  If you know me then you should be aware how much my chronic illness dominates my life.  My illness fluctuates, which means that some days are better than others, I may have been well enough to go to an event recently, but that doesn't mean that I have recovered.  What you have said implies that I can get better from the illness, unfortunately that is not possible.

I know your thinking, well what can I say to people with chronic illnesses?  I have written a blog post about what to say, I'll link it here when it is finished.