ME/CFS Week: Implications of Illness

"What are you studying? Nothing? Oh, where do you work then? Really? Then what is it that you do all day? Ha fair enough, must be nice taking a few years out.."

Part of understanding ME/CFS is understanding the affect it has on the day-to-day lives of people with the illness. It's kind of hard to understand how much impact something like this can have on a person's life unless you've experienced it first hand, or are close with someone who has. I've been incredibly fortunate with my friends and their level of understanding, but even after five and a half years they are sometimes surprised by just how much of an impact this disease has.

School/College/Work

Often when people first begin to show symptoms they try to ignore it and carry on as normal. This never lasts long. For some, the only thing they can do is leave completely. Needless to say this can be devastating for your self-esteem and leave you scared for the future. It translates to loss of income, lack of qualifications, being 'left behind' by your peers and uncertainty about your future career.
Many people find themselves in a less drastic position though. Depending on their health, job and age they may have more flexibility in work or school. They may be able to take it easy or do half-days, some can even go full speed. Even this though can make life difficult. Working full time take a lot of energy for anyone, but for someone with a chronic illness it literally takes every ounce of energy you have. This can result in people being too tired to do anything but literally go home and sleep until the following morning when you get to go back to work. There is often no time for eating, physiotherapy, talking to people, watching TV or anything else. People functioning like this are sacrificing a quicker recovery time just to keep up with the able-bodied people around them.

Social

There's much doubt and discrimination against those with illnesses like ME/CFS. As it is a diagnosis of exclusion, it cannot be tested for or proven. I'll cover all of that though in a different post, what I'm talking about here is from the perspective of the individual. So forget everyone else, work on the assumption here that all your friends and family are super understanding and accommodating.
We've already established that if you're putting all your energy into work you will have no energy for anything else. What people don't seem to understand though is that if you are someone who doesn't have enough energy for work, you also don't have any energy for a social life. I'm lucky enough to live with one of my friends and my boyfriend, so although I only see my other friends about once a week (if that) I still get to be fairly social. Unfortunately though not everyone is so lucky. The word 'lonely' reaches a whole new meaning when you haven't laid eyes on anyone within twenty years of your age in over three months. You end up drifting away from your friends quite quickly and it's very hard for them to understand that although you haven't seen them in several weeks, you haven't seen anyone else since either.
Being so isolated changes you. It changes how you interact with people and how well you cope in social situations. It can cause severe social anxiety and feelings of being left behind, forgotten, out of the loop and even purposefully rejected.

Staying At Home

Obviously with an illness you stay at home a lot. Well duh. But how do you not get bored? There's nothing to do! Well, here's 15 easy steps to live like a patient for a day:

Step 1: Wake up. Fail. Try again. Fail. Rinse and repeat.
Step 2: Arrange for someone to bring you breakfast. Can't do that? Repeat Step 1 until you can muster the energy to get out of bed.
Step 3: Morning meds. Try to remember all the right ones at the right times.

Step 4: Attempt a shower. Can't manage it? Try to wash at the sink. Can't manage that either? Ok, you're going to be icky today.
Step 5: Nap/rest. You have exhausted yourself with all this breakfast and showering malarky.
Step 6: Need to pee? Right. Too sore to get up. Weigh pros and cons for about half an hour til you can't hold it any more. Go to the bathroom. Return to sofa/bed, painfully regretting the decision to ever drink anything ever.
Step 7: Recover from bathroom trip.
Step 8: Forgot about lunch. And daytime pills. If it's a bad day or the pills are too far away it's not worth it.
Step 9: If you can, sort out lunch and pills. Feel oddly refreshed.
Step 10: Cease to feel refreshed. Have a nap.
Step 11: Try to talk to someone online. Get halfway through a conversation.
Step 12: Too much exertion, need to rest.
Step 13: Repeat 'lunch crisis' with dinner and evening pills.
Step 14: Rest, try to wind down.
Step 15: Bedtime. Sleep. Fail. Try again. Fail. Rinse and repeat.

That is genuinely what a medium-bad day looks like. A good-medium day will involve slightly more conversation and maybe a blog post but that's about it.



Now, I could include all the things about what happens when you try big stuff, like starting a new job or moving, but the truth is that there isn't much point. Big events are more or less impossible for most ME/CFS sufferers, and the difficulties are pretty much the same as everyone else. The only difference is that you're adding these difficulties to everything listed above, an already severely restricted life.




"What are you studying? Nothing? Oh, where do you work then? Really? Then what is it that you do all day? Ha fair enough, must be nice taking a few years out.."
How are you supposed to answer this every time you meet someone new? How do you even mention something like ME/CFS if nobody understands what it is? How do you get them to see you as a person and not a helpless infant once they know about it?
"Ha yea, well I have ME. It just basically makes you sleepy a lot. It's not a big deal."
This is why it's important for people to know about the lives of people with chronic illness, so we don't have to justify our day-to-day lives or act like it's not a massive thing.




To finish on a lighter note, here's what a bunny would look like if it had ME/CFS:

ME/CFS Week: Awareness Day

Happy ME/CFS Awareness Day!

To celebrate, I will be trying to post every day this week about the varying aspects of ME/CFS. Today, however, I will just start with an introduction. This is not the most sun-shiny post in the world and I'd be lying if I said I wasn't afraid of people thinking I'm looking for attention, but this is important. I am a happy person with a really great life but this illness tries to take that away every single day. I won't let it - not because I'm amazingly strong, but because I can't. I don't need a medal for living my life, but please try to understand this aspect of it.

What does ME/CFS mean?

ME stands for Myalgic Encephalomyelitis, CFS stands for Chronic Fatigue Syndrome. They are two names for the same illness¹, which is known as one of the 'invisible illnesses'.

What is an 'invisible illness'?

Invisible illnesses are ones that show no outward symptoms. Basically you look entirely healthy but you could
be suffering from extreme exhaustion, pain or other internal symptoms. Other examples of invisible illnesses include Fibromyalgia, Cystic Fibrosis, and Multiple Sclerosis.

Ok, so what is ME/CFS then?

ME/CFS is an autoimmune disease. It makes you tired, that's kind of a given from the whole 'Chronic Fatigue Syndrome' bit. Unfortunately it seems that most people who've heard about it are usually under the impression that that's the only symptom. The truth is it's not. It's not even close.
When you have ME/CFS your energy will never get higher than about 8/10, and is rarely higher than a 6/10. As many of you will know from school/college/work, it can be really hard to concentrate and function like that - let alone attempt physical activity. People with this disease often end up sleeping 16-20 hours a day which, you know, kind cuts into productivity.
Additionally there's a sort of 'brain fog' that comes with the illness. Kind of like those days when you're just moving at a snail's pace, you can't quite think and concentration is out of the question. Everyone has these days occasionally, but with ME/CFS this is your permanent mental state. It makes reading, memory and any sort of academia almost impossible.
Muscle and joint pain are also part of this fun package, usually coupled with muscle weakness. Some are lucky enough not to experience too much pain, as I was for the first couple of years, but even without it mobility is still difficult. With the pain on top of everything else sufferers are often left almost entirely bedridden for years.
As well as the big stuff, which I would classify as the main symptoms, there are many more bits and bobs which often are just inconveniences. Unfortunately these inconveniences are the bits that make day-to-day life incredibly difficult. These include: unrefreshing sleep, trouble sleeping, night sweats and chills, headaches, sore throat, dizziness and balance issues and increased sensivity (particularly when it comes to eyes, ears and skin).


That's all for now, just be aware! There'll be more tomorrow, and remember:

¹ Some specialists will define them as different illnesses, but at the end of the day it's more of a terminology thing than anything else.

The Shape of Things To Come

There have been several posts that I've wanted to write over the last little while. There are many reasons why I didn't write them, but mostly they came down to one recurring annoyance; me.

Hey, I'm the kind of person who writes a personal blog, you can't expect me to not be self-centred. There have been 6 personal pronouns so far out of only 65 words - and it only gets worse from here on in.

Basically all of it's got me thinking about the nature of opinions. I have refrained from expressing mine because I feel like who I am makes them somehow less valid. Who am I to comment on wisdom at age 21? How can I justify talking about stereotypes when I fit so many of them? Then again.. does being 21 allow me to comment on the ignorance of some 12-year-olds? Can I complain about stereotypes, so long as I avoid the ones that apply to me?

Actually I kind of think most of what I just said is bullshit. The problem is that thinking it's bullshit doesn't stop me from allowing it to shape my opinions. This is annoying me to no end. The thing is, I don't think it's a me-being-annoying thing so much as a human-nature-sucking thing. I look at the people around me and I can see it influencing them - whether they bow to it like me or over compensate for it, it still shapes them.

This is why I wanted to write this, I want to be clear about a few things when it comes to future posts:

I am a middle class white female. None of my opinions or decisions represent those of other middle class white females. They are their own people with their own opinions for their own reasons.

I am in a long term relationship with a male. I am still entitled to my opinions on sexuality, relationships and romance. These opinions have not been solely formed based on this relationship, and please do not presume to know my romantic history or how it may or may not have affected me - only a couple of people know everything there is to know, and even they have only heard it from my own biased perspective.

I am young. My peers and other influences growing up have influenced the way I think and process information, so if you are significantly older or younger than I am please do not write off my opinions because of this but instead try to put yourself in my shoes.

I'm not overly smart, but I'm not stupid either. I don't know everything. I will never know everything. I try not to comment on things unless I feel I have a reasonable understanding of it based on several reliable sources. If I'm way off base on the facts (not opinions, mind you) I'd appreciate being told or given the benefit of the doubt, please do not assume it is my age or deliberate ignorance getting in the way.

I have a long-term illness. It sucks, but I'm happy. I have a great life, genuinely. Feel free to have sympathy for the fact that I'm sick, but please don't pity me. If nothing else there's no reason for it. Also it's patronizing as all hell.

I love my family. My good relationship with my family shouldn't really affect how seriously my views on family, children, relationships and family issues (divorce, abuse, etc.) are taken.

I'm trying not to disclose anything here that I wouldn't tell an acquaintance in a five minute conversation - not just on this post but on the blog in general. It's easy to forget that this won't just be seen by the two or three friends who make a point of reading it, or even just by the people I'm friends with on Facebook. The internet is public and though I want to share my views and have them out there, I hate the idea of them being written off just because it was me who said them. We are all who we are, for better or worse. We should try to improve ourselves where possible but I feel like even if I'm just shot down and corrected that's improvement. Just as long as they're shot down for being incorrect, not because I'm blond or whatever.

I tried a few times to make this sound less bitter, uppety and generally patronizing but I couldn't. Just please take my word for it that I was erring on the side of clarity. Mostly I was just trying to write a disclaimer for when future posts are taken the wrong way (or taken the right way, but where I didn't think before I typed).