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6 Things I've Learned During My First Year With CFS

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It’s been a year since I was finally diagnosed with chronic fatigue syndrome (CFS), after spending five years in and out of hospital with varying diagnosis. A lot has happened in a year – I have had to adjust my lifestyle dramatically in order to accommodate managing my fatigue and pain so that I can still live out a “life to the full” lifestyle, without having a full schedule like most people. But, there is hope – for all of us. I am still learning what works best for my body and how to successfully manage my fatigue and pains, but I am confident that although I may never recover fully, I can make the most of having a dysfunctional body, and my hope is that you will too.

I’ve learnt a lot over this last year, through research, listening to my own body, professional help and from hearing the stories of people who struggle with CFS as well. So, I thought I would share a few things that I have learnt in the hope that these may assist you in discovering what works best for you own body.

1. Everyone’s struggle is individual.

The more I share about life with chronic fatigue syndrome, the more stories are returned with me, with people who have struggled with the same illness. But, what I find most interesting about these stories is that there is not one that is identical to the other. Each individual has struggled with their own unique set of symptoms, some of which match my own, and others in some ways – but rarely in all ways. Just because chronic fatigue is categorized as an “invisible illness,” that doesn’t mean that we should have to keep it invisible. Please continue to share your personal experiences with friends and family so that they are aware of what life is like for you, and also to encourage others who are fighting a similar fight that you are.

2. Your pain is your own, we all just have different triggers.

When I eventually stopped comparing my pain and exhaustion to others, I came to the realization that I will always be in more pain than some, and some will always be in more pain than I – but neither of those factors devalue how I am feeling.

Even though our pain is personal, it doesn’t mean that we should keep it to ourselves. Vulnerability with my friends and family has allowed me to feel comfortable when I am having a flare-up, or just struggling with the day-to-day things to ask for help and for them to accept me as I am, without me using up more energy to pretend that everything is OK. Telling them was a big step, but the more people who knew, the less embarrassed I became when I had to leave events early or cancel last minute on an event. It also meant that everyone was more accepting and already knew that it wasn’t me being rude of ungrateful, but that I was just struggling that day.

People may not always understand and they may even be ignorantly hurtful about it, but you can always find people who are willing to listen to you. If you feel that telling people that you know about your illness is too big a step at the moment, why not get involved in an online community? There are so many online support groups, I am involved in two, filled with people going through similar trials to you and may offer insight, encouragement and advice in the different aspects of this.

3. Your physical health will have an impact on your mental health.

All of the various physical symptoms and pains of chronic fatigue syndrome do take its toll on your mental health, no matter how positive and joyful your life may be. There may be days where the loneliness from being cooped up in the house for any extended period could bring your mood right down. The pain might be too much to bare and you may not be able to help but lie there wishing for some way to make it stop. The exhaustion may become all-consuming; that feeling that I can only describe as if you’ve been hit by a truck that has been carrying gallons of a flu virus. And it’s likely that you will become so frustrated at how slow your brain is working because of the fog that not trying to communicate or think at all may seem like the best option.

These days are normal and are not days that we should be fearful of or feel defeated by. Life isn’t always the beautiful picturesque illusion that we are presented with daily on social media, television and the people that we know. Everyone’s life is ordinary, but should we so desire it, life can be rather exceptional – should we make the effort to find what makes our hearts joyful daily.

That joy I have found is often found in the little things and the small achievements that we can accomplish. Some days, that accomplishment may simply be managing to get out of bed for a moment, or messaging a friend, or coloring in part of a page, or making a basic meal. Joy is effort, it may not always come easily, but once you have found something or someone that makes you truly happy, then it makes the pain a little easier. I had this described to me as if you have broken your leg then there is a definite physical pain and nothing can detract from that pain. But, if you have a broken leg and you’ve won the lottery, then it makes the broken leg seem a little easier because there is something good that is in your life right now. Don’t wait for your “lottery moment” to fall into your lap, you can find it for yourself and you don’t even have to leave your bed if need be.

4. It is OK to accept financial aid.

I am aware that there is a lot of negative stigma surrounding claiming benefits and the stereotypes that are often made about the people who claim them, but I would like to say upfront that there is nothing wrong with accepting financial aid if you are entitled to it. Very rarely are there people who don’t need to claim and claim it, almost always are benefits claimed by people who genuinely need the aid. For now, I am one of those people, but I didn’t claim anything for a long time because I felt ashamed of what other people might think of me for doing so. I didn’t want people to think that I was “lazy” because I was claiming benefits, or “poor” because I couldn’t depend on myself to support a basic living.

Eventually, I found some benefits that I was entitled to as someone ill and unable to work and they have allowed me to become more independent in my living, even though I still rely on my mum for a lot of my financial needs. The actual task of claiming can be difficult as there are various phone calls and evaluations and forms to be filled out, and the process has been exhausting and not the most positive experience – but it was worth the energy in order to afford to live. For those wondering, it isn’t an excessive amount of money, it isn’t a particularly luxurious amount, but it is enough. Please don’t feel ashamed to claim. You don’t even have to tell anyone that you are claiming benefits if you are embarrassed for any reason. If you need it, then fight for it because it will enable you to live a little freer than you are currently with your finance.

5. Disability aids are there to enable you

Everyone’s chronic illness is individual and specific to themselves, which is why I am grateful to the array of disability aids that are available for each individual to use depending on their need. We shouldn’t feel embarrassed or ashamed of having to use these appliances to get from A to B, or to assist us in our homes – they are tools to allow us and those around us to support us in being more independent. If you need crutches, seats, wheelchairs, medication, lifts or modified clothing to make your living with chronic illness feel more normal to you – then please make full use of these things! They are there to enable and give you a little more power and control over your life. I have done another blog piece on The Mighty talking specifically about my experiences with a shower seat that you are more than welcome to have a look at and find a little more on my thoughts surrounding aids.

6. Your illness does not define your life.

When I was first diagnosed, I remember I had a lack of reaction initially to the diagnosis. I knew around four young people all with varying extremities and all with different ways of managing it. Looking at them and comparing my fatigue to theirs launched me into an ongoing denial of what was wrong with me. Eventually, after pushing myself to keep up with those around me, I burned out and realized that the exhaustion and pain were a part of my life and there wasn’t an immediate cure for it.

The next month was spent grieving the healthy life that I was longing for. Due to being ill, I had to drop down to taking two A Level courses in college, quit my beloved job at the theater and cut down my social hours. I was also told that I would no longer be able to go away from home and study at university, which is what I had been dreaming of and working towards for a long time.

People often associate grieving with the tragic loss of a loved one, but I believe that there is a stage of grieving with any life-altering illness. You can throw yourself a little bit of a pity party and to feel deprived of the life you have been working towards and aspiring to. But, you must get up eventually.

I am still learning all of this but this has been the biggest lesson I have learnt in the last year regarding chronic illness is that we are worth more than the illness that we are carrying, and that it does not define who we are as a person. We still get a choice in the type of people that we want to be, the choice to be compassionate, to persevere, to love ourselves and others, to be happy. Of course, being ill, we shape who we are as people and will give us different experiences that we hope others will not have to go through, but we can choose to not let it defeat us and rob us from the life that we have been given.

It has been an interesting year and I know that the next year with chronic fatigue will be challenging again. None of the above will heal you or make you better; but it might just make it a little easier. Keep fighting, warriors.

Originally published: March 29, 2018
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