Chronic Fatigue Syndrome/ME

Illness Army: “9 Things I wish I knew when I first fell ill”

 

Here is a thoughtful, honest piece from my friend Rhosyn.
She runs the blog https://rhosynmd.wordpress.com and is happy to chat to any sufferers who are seeking support. Rhosynhas been ill for four years now and has gained many coping mechanisms along the way, that she is happy to share with you.
Please give her a follow.

 

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A few months ago I was laying in bed after another fruitless doctors appointment and I was thinking of all the things I wish I knew at the start of my illness, so I decided to write them down in the hope that they might help someone else. So, without further ado, here are my top tips for the recently diagnosed chronic illness warrior.

1.) Don’t dive into anything right away.

Make sure you give yourself time and space to consider which path is right for you, because there will be many, and you can’t do them all at once. I know all you want is to get better as fast as possible, but if you dive straight in without considering the consequences you could end up doing more harm than good.

2.) Let yourself grieve for your old life.

As hard as this is to hear, your life is never going to be the same again. It’s a devastating loss, especially if you’re young, and it’s incredible hard to accept that you can’t do all the things you want. I don’t think it’s possible to get over it completely, of course you’re still going to have days when all you feel are anger and sadness, but you need to let out those feelings instead of holding onto them or pushing them down. If you refuse to deal with how you feel, it’ll only get worse and end up impacting your physical health as well.

3.) Get a therapist.

I know a lot of people are reluctant to do this, and some see as a sign of weakness (mainly due to the connotations between therapy and mental illness and the stigma that that comes with), but that’s a load of crap. There’s no shame in admitting you’re having trouble dealing with everything, because who gets a chronic illness, has their life turned upside down, and is perfectly fine? Nobody.

I know therapy can be expensive, but many therapists have negotiable fees for people who are on lower income, so don’t worry about asking about that. Personally I think it’s worth every penny. I don’t think I could cope if I didn’t have someone to talk to about everything I’m feeling and help me make sense of it, it makes me feel a whole lot less crazy haha.

4.) Become your own doctor.

Our global healthcare system has a very poor understanding of chronic illness as a whole. My main illness (myalgic encephalomyelitis) doesn’t even have a diagnostic test for goodness sake!

GP’s will vary between “incredible understanding but useless” to “disbelief that you actually are ill”. I am very lucky that I have a very understanding GP, but there’s really not much she can do, so you, the patient, have to take over.

I go nearly every month armed with a list of questions, and whenever you get put on a new medication, double and triple check for any interactions with the tablets you’re already taking. It may sound obsessive, but it is necessary. You’d be surprised how often these things are missed.

5.) There will be people who don’t understand and make hurtful comments.

This was probably the hardest one to learn. I’ve always been incredible open about my illnesses, how they affect me, and how I struggle day to day. I thought by doing this I could side step the stigma and ignorance that comes with the territory of having chronic and/or mental illnesses. Oh how wrong I was… If I had a pound for every time I’d heard; “Come on, you’re just not trying hard enough”, “everyone gets tired sometimes”, or “oh I know how you feel, I feel so hungover today” (I could go on)…I’d have enough money to find myself a cure!

There’s no way to get around the fact that some people just don’t get it, and never will. The easiest thing to do is to just cut them out of your life. I know this may seem drastic, but honestly it’s so much easier in the long run. You need every scrap of energy you can, you don’t have enough to waste it on trying to get people to understand.

6.) Get used to asking for help.

Realising you can’t do things that you used to be able to because you’re ill is so hard, in fact there aren’t words describe how crushing it is. The realisation that at 22 I’m just as dependent on my parents as I was when I was a child is utterly disempowering. Not being able to walk to the corner shop, or even to walk to the kitchen to get myself breakfast… Well…there is no way to get used to it, but the sooner you swallow your pride and ask for help, the sooner you’ll get better because you won’t be pushing yourself to do things that are beyond you at that moment.

7.) Your body is going to change.

This is an important one. At the beginning of my illness I got put on a medication that caused me to gain a lot of weight. It happened so fast that I would look in the mirror and not recognise the person who I saw. It made me very depressed, and it’s something that I still struggle with now sometimes.

Everyone will experience different changes, whether it’s gaining weight, losing hair, or having bad skin. As so far as is possible try not to let it affect how you are as person, because whatever it is that changes your body, it won’t change how kind you are, how generous you or how much you love your friends and family. Those are things that matter and the things that people remember, hold on to them.

8.) Get on social media.

Being chronically ill is incredible isolating. Your energy is extremely limited, and it has to go towards the necessary tasks such as work (if you’re well enough), cooking, and many (many) doctors appointments. You will also probably find that the number of people you call friends, will decrease significantly. They do say hard times reveal true friends, and that has never been more true than with chronic illness. Initially of course, this is incredible painful, but it does get easier, I can vouch for that.

I’m sure many of you are already on social media, I certainly was when I first became ill. However I had no idea of the amazing community (the “spoonie community”) of chronic illness sufferers that exists online. Whether it’s Facebook groups, Twitter, Instagram, and (obviously) blogs. Whatever you are going through or suffering from I can guarantee that you can find someone going through something similar. The amount of support the online community offers is incredible.

9.) Some days you will feel like you can’t go on, but you can!

This is where I find Mindfullness really helpful. Day to day, I don’t think about the future, I don’t even think about next week, or tomorrow. If I did I would just collapse into an existential crisis. I just think about today, this hour, this minute. There’s no point in thinking about anything else because I don’t know how I’m going to feel tomorrow or the next day.

I’m not going sugar-coat it and say that having a chronic illness is easy, because I’d be lying, it’s not. There are days when it all feels like too much and there’s no point in anything anymore, but please know that everyone has days like that. It’s completely normal to feel depressed sometimes. All you have to do is put one foot in front of the other. The human spirit is uniquely indomitable, you can survive this!

I hope you like what I’ve written, do please go check out my main blog if you do, and please let me know if there’s anything you think I should add to this list.

Until next time, Rhosyn

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Illness Army: “CFS/ME and Me”

Living with an invisible illness is tough. In fact, to say it’s tough is an understatement. You get the usual “you don’t look sick” or “well, you look alright”, and whilst it’s quite reassuring to know that you look somewhat ‘normal’ and like everyone else, those words come to be the bane of your life. I’ve only suffered with Chronic Fatigue Syndrome / Myalgic Encephalitis for little over a year, but in some ways I think it’s been harder to begin with as the days of being a healthy and active person are only recent memories and the sudden decline in my health and wellbeing have come as a shock to the system. I still feel like I can do all the things I used to and on good days I can remember what it was like to feel energised and strong.

My CFS/ME story began last year after I was hospitalised with Glandular Fever and Sepsis. (To read more up on my experience with Sepsis, blood poisoning, I have a post on my blog about it.) It was since these two horrible illnesses that I just never got better. It’s hard to explain it to people and I always feel that people don’t believe me, or if they do, they don’t understand how bad it is. But then again, how can I expect them to? CFS/ME is a grey area in the way of medicine. No one is really sure what causes it or how to cure it. It’s basically a condition where the body isn’t able to ‘recharge’ itself so sleep doesn’t feel refreshing and in turn a patient doesn’t have as much energy as a healthy person. Some common symptoms are fatigue, muscle and joint pain, concentration and memory problems, painful lymph nodes, sore throat, malaise, sensitivity to light and noise and psychological problems such as depression. Some people suffer with just fatigue and others have multiple symptoms (Unfortunately I am one of these people. I seem to have every symptoms of it!). Severities vary from mild, meaning a person can generally care for themselves and carry on as normal, to severe, where a patient could be wheelchair or bed bound.

Ive spent the last week in a terrible ‘flare up’ after a massage and have done almost nothing but rest. The day after the massage I physically couldn’t move at all. It’s hard to come to terms with the fact that even something that is supposed to be relaxing and helpful puts such a strain on my body that I spend the next week paying for it. I’m trying so hard to pace myself in the hope that this will keep my body balanced and avoid any future relapses.

I spent a long time in and out of the doctors surgery trying to get to the bottom of what it was that was making me so I’ll. Blood test after blood test. Eventually, they came to the conclusion that it was CFS/ME and have referred me to a specialist in order to get help. Since then, I’ve decided I won’t let my condition get the better of me and I am trying and testing any method of easing the pain and fatigue and documenting it in my blog for others to read, and in the process hopefully help others suffering with the same illness.

The author of this post is a new blogger, Emilie.
Emilie is extending her hand to other sufferers of Chronic Illness and is happy to chat through her blog  http://www.emiliecfsme.wordpress.com
On her blog you will find tried and tested coping methods and other information related to her Chronic Condition and others.

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