ME/CFS Week: The End

Apologies for the delay, this was supposed to be posted yesterday (Sunday) but that was not possible due to circumstances beyond my control.

So it's the final day of ME/CFS week. I hope that some of you have learned something about ME/CFS from these posts, or at least had it brought to the forefront of your mind for a few days. Regardless, I'd really like to thank everyone for reading (even if you only read one or two of them) and for sharing them on Facebook. It really means a lot to me and others with the disease that you did.
This post today is going to be short and sweet. There's a lot left to say about the illness and how affects the lives of sufferers, but so much of it is specific to the individual that I don't feel it's my place to say. After all I don't speak for every person with ME/CFS.

Being sick doesn't always mean being sad. Everyone has to overcome things in their lives. For some people it's illness or disability, for others it could be family troubles, conflicts, trauma or any number of other things. At the end of the day we must acknowledge the problem, deal with it, and either move on or (if it's ongoing) lessen its impact. That's exactly what we do with illness, too. People look at how little we can do on a daily basis and say "Oh that must be terrible, you must be miserable" because they're thinking of it in terms of their lives. The truth is that when living with something like this you adapt. You leave your job or your school, you stop your hobbies. It sucks that you have adapt that way, but that's life. Sympathy and understanding can make it suck a lot less, and can also help to make you feel better in the times when you really do feel miserable about it. Pity is likely to make you feel worse and stop you from opening up to anyone.

I'd also like to take this opportunity to mention other invisible illnesses. I've explained before what they are and I've been trying to mention them throughout my other posts. The reason for this is that a lot of the things that apply to ME/CFS also apply to many other invisible illnesses. It's an important thing to acknowledge. After all, you may only know one person with ME/CFS but there may be a dozen other people you know with invisible illnesses that you're completely unaware of. These people all deserve the same understanding and sympathy as those with ME/CFS or, as I said above, anyone else going through something.

We are battling a disease. We did not sign up to fight willingly, but were drafted against our will to wage a war that most other people seem oblivious to. It's not honour, glory and medals we're looking for. We're not doing this because we believe in it, we're doing it because we weren't given a choice. All we want is help and understanding. We're not special, we're just people.

ME/CFS Week: A Spoonful of Sugar

When it comes to sickness, treatment seems obvious - though not always affective. Have an infection? Antibiotics. Cancer? Surgery, radiotherapy and chemotherapy. Even with the common cold we know to rest, drink fluids and eat chicken soup.
So why is it that when it comes to ME/CFS everyone seems to treat it differently? Some patients are on so many pills that they'd rattle if you shook them, while others don't even take paracetemol for a headache.

Basically the reason is lack of knowledge about the disease. As a result different doctors take different approaches, which is perfectly understandable and will eventually lead to better understanding of the illness and its treatment. In the spirit of awareness and settling curiosities, I've listed below some of
the treatments for people with ME/CFS. It could help you keep track if a friend is talking about their doctor appointments and whatnot.

Pacing

A word that most people with chronic illness are sick to death of. It's the word every doctor and consultant uses all the time. Basically it refers to limiting your activity so as to not overextend yourself. Sometimes you don't realise you're tired til you're already too far gone. Over time you can build up your energy and stamina but it can be frustrating in the meantime. The idea is to not let yourself get too tired as you'll crash the next day, but instead keep your day-to-day energy as consistent as possible. This is the only treatment I'm aware of that actually helps your health improve, most others seem to make you more comfortable and functional in the meantime.

Medicating

Medicating is exactly what it says on the tin. It's treatment through the use of prescription or over the counter drugs and tonics. Usually for ME/CFS this is a combination of painkillers, stimulants and or sleeping aids. While the right combination can give great and fast results, the short term and long term side effects can be pretty awful. Because of this many doctors try to avoid it, particularly if a patient is hyper sensitive as many are.

CBT

CBT stands for Cognitive Behavioural Therapy. It's a form of therapy which focusses on acknowledging your limits and structuring your life around them as efficiently as possible. Obviously it can't help with the physical aspects of the illness but it can often really help the managing of the illness which in turn helps you recover faster.

Natural Remedies

Probably sounds like hippy dippy stuff, right? Well what I'm talking about here isn't I-don't-need-chemo-I-have-a-magic-leaf-to-fix-me stuff. It's more about finding the small benefits of various plants and things and using them to ease your symptoms. For example using ginger to settle your nausea, or chewing coffee beans to perk you up. It's less affective than many other routes but has almost no long term side affects and can make day-to-day life much more comfortable. It's also good for people who are sensitive to preservatives and such.

GET

Doctors really like initialisms, it gets super confusing. This particular one stands for Graded Exercise
Therapy. It's kind of like physiotherapy in that it's a way of helping recovery through exercise but it works a little differently. With GET you receive a list of exercises but only in very small amounts of each. The idea is that over time you slowly build up strength and gradually increase your exercises.


Most of these are used in conjunction with others, it'd be rare that you'd find someone only using one. Of course, someone's choice of treatment is entirely up to them but it'd be helpful for both of you to be able to discuss it properly. If you'd like more information there's plenty available online but I'd advise avoiding stuff that says one is perfect or one doesn't work at all ever, as each has its merits and drawbacks.

ME/CFS Week: It's The Little Things

Any person with a long term illness could tell you that being sick makes big social occasions hard. Often they require a lot of mingling and active participation which is almost impossible if you're in pain or have no energy. The last big event I went to was on Good Friday and I fell asleep in a corner twice. Even small events in big locations like clubs or bars can be difficult for the same reasons.
As a result, people stop inviting ill people some events because they know attendance is unlikely. This in itself can mean that the ill person feels left out and gets to see their friends less often.
That's why I've decided to write today about more inclusive activities for people with disabilities and illnesses. You never know, you might discover some fun ways to get to see a friend who's sick and reluctant to come out much. I've tried to only include activities here which don't revolve around the sick person because everyone else should be able to have fun too and it's less of an inconvenience if the sick person has to cancel last minute.

Picnics

Ok, I live in Ireland so picnics aren't exactly a wise idea all year round. If you live somewhere else (or in Ireland during the 2 weeks of 'summer' every year) though then it's well worth a try. If you plan it in a place that's easily accessible you can get a nice big group together without the hustle and bustle of an indoor event.

Going Out To Lunch/Dinner

As simple and everyday as it sounds, going out to lunch or dinner can really brighten up your day. It doesn't have to be something fancy. Even a casual meal has the benefit of getting someone out of the house, giving them company and it only needs a couple of hours worth of energy to do.

Movie Days

This is one of my personal favourites because it's something that I used to do all the time before I got sick. Go to Netflix or get a DVD, invite a couple of people over and have a movie day. If it's very close friends only then it can be hosted at the sick person's house (just make sure you help clean up afterwards). When the focus is on something else it's easy for someone to drop out of conversation or go and lie down somewhere without attention being drawn to them. Also there's almost no movement involved for the entire day.

Baking days

You can only really do this with around 3 people or fewer, but it's a great way to spend the day. The energy required for baking is significantly lessened when there's another person to help. If you notice your friend beginning to wilt, just pick up the slack so that they don't run out of energy entirely. There's also a built-in rest break as the food cooks, followed by a sitting-around-eating break after.

Bringing Over Dinner

Eat food, chat, maybe watch a film. It only takes a couple of hours worth of energy and bringing over food saves the sick person energy on buying food, cooking, cleaning and travelling. If you're doing it with someone who's reasonably healthy you can take it in turns to bring stuff over, but be willing to settle for takeaway, pre-made food or ready meals when it's their turn.

One-time Classes

Now classes do have one significant downfall: You lose money if you cancel last minute. If, however, the sick person in question is going through a consistent phase of the illness these classes can be really great. Sites like Living Social offer one-time classes at a discount. They require about 2-3 hours of energy and at the very least you'll learn some new skills like pottery or cooking.


You can also make bigger events easier by making sure there's a suitable resting/napping place available nearby and making sure there's a lot of people they know also attending. That's often an inconvenience though so if you're not able to don't worry about it. If you're really at a loss, don't be afraid to ask your friend what they want to do. These suggestions are more about when the patient is unwilling to risk going out or seeing people. I hope these help a bit, bye for now!

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: