I May be Chronically Ill, and I’m Not Sure How to Deal With It

I haven’t written on this blog or my eating disorder recovery blog for a long time. The last time I made a blog entry here was five months ago. On my eating disorder recovery blog is was four months ago, and then before that, six months. The reason for that? I’ve had to stop doing a lot of things I used to do. In the past year I’ve been having to do a lot of prioritising, and even then, I’ve been doing far too much.

The thing is, I was going to wait to write about this. I wanted to be sure that what I am writing about is in fact what I have. I wanted to write about something that was definitive, so that I wouldn’t have to backtrack later and say “turns out I don’t actually have this”, but I need to get this off my chest.

I am in the process of waiting to see a specialist for Chronic Fatigue Syndrome.

I am suffering more and more. I have been on a decline for the past few years, but only recently considered that it could be CFS. I went to the doctor a couple of months ago, and subsequently had all of the elimination tests. You see, there aren’t any tests you can take to give you an answer as to whether you have CFS or not. You can only eliminate everything else, and then see a specialist to determine whether you fit the diagnosis enough. The main symptom of CFS is relentless and severe fatigue that does not go away with rest or sleep. This fatigue often interferes, sometimes dramatically, in people’s ability to perform every day tasks and activities. It is not the same as feeling regular tiredness. CFS also comes with a myriad of other symptoms, including sleep issues, muscle and joint pain, headaches, a sore throat or glands, flu-like symptoms, dizziness, nausea, irregular heartbeat, problems with short term memory, difficulty concentrating, and other cognitive impairment issues (these symptoms are not exhaustive). Physical and mental exertion trigger these symptoms to become worse, so exercise and stress are two of the biggest things likely to exacerbate symptoms.

CFS is incurable and treatment is only in respect to symptom management. CFS affects an estimate 20 million people worldwide. 25% of sufferers are severely affected and become house or bed bound within their lifetime. It is four times more likely to affect women than men, but other than that it does not discriminate and can affect anyone of any age, racial, ethnic, or socioeconomic group. The causes of CFS are unclear. Most adults do not recover, although children who have developed CFS have a much better prognosis.

I have been experiencing fatigue that has been worsening for at least two years. I have taken time off work once a year for the past two years and thought that it was a burn out due to stress. However, I am now rethinking everything about the past two years and how it makes so much sense in terms of CFS.

For example, the past few years I thought I was anxious about driving. Whilst driving (usually on the way home from driving somewhere), I have often experienced feeling spaced out and very tired. Now I realise that I’ve not been anxious about driving; I’ve been anxious about feeling unwell whilst driving. I thought feeling spaced out and tired were symptoms of my anxiety about driving, but in reality when I think about it, my anxiety is caused by me feeling unwell. Therefore, I don’t drive often, because it makes me feel fatigued.

Another example is how difficult I have found everything. And I mean E-V-E-R-Y-T-H-I-N-G. Life has felt pretty damn hard for me the past few years and I have really beaten myself up for what I felt was me being weak. I have found myself questioning how everyone else can work full time, have a social life, be engaged with their passions, interests, and hobbies, exercise, do all the household chores and other tasks that we have to as adults, and not feel like they are going to collapse and throw up every other day. Now it makes sense: I cannot function like other people because I (most likely) have a disability that stops me from being able to do this. And because I did not know that I (most likely) have this disability, I have pushed myself repeatedly to do more and more and more, and have in all honesty probably caused myself to get sicker and sicker. My personality does not help: I am a perfectionist; I like to get everything on my task list completed ASAP; I want to feel productive and active; I am a busybody. I also have an eating disorder that is in remission, but I have a tenuous relationship with exercise that helps keep unwanted thoughts and feelings at bay. This means that I have been much more active than the average person, but not so much that it is a problem, and I have lots of rules I set myself around exercise to keep it both mentally and physically healthy. Right now I am less active than I was a couple of months ago before I significantly worsened and started the process of being investigated for CFS.

And now we get to what I really want to write about: how this is affecting me.

Right now, I am waiting for a definitive diagnosis and that is hard in itself because it makes it hard to talk about with people when I’m not totally sure that is what I have. I may have to backtrack later on and talk about it differently. However, since everything else has been ruled out, it does look probable. And with that probability comes the knowledge that I probably have a chronic illness that is incurable and not really particularly treatable. I am going to have to accept that I am sick; that I am disabled. I am going to have to accept that my life is never going to be the same again. I am going to have to come to terms with the fact that I am going to feel unwell for a huge proportion of my life. I am going to have to face the fact that my days of high levels of physical activity are over (cue anxiety), that I am not going to be able to attend lots of social events (cue sadness), that I will need a lot of help and support (cue feelings of being a burden), that I may get even sicker (cue fear), that being pregnant and having a baby could completely debilitating for me (cue terror), that financially this could be an absolute nightmare (cue more anxiety), and that people might not understand my illness (please friends, please understand).

I’m afraid that my friends will see me walking around one day and think “well yesterday she said she couldn’t meet me for coffee”. I’m afraid I might have to call in sick for work and my colleagues might see me walking to the corner shop and think “well why isn’t she in work then?!” I’m afraid that I will cancel a family get together and they will think “but last week she was fine!” The thing is, how I feel varies from day to day. Even more so, at the moment, it tends to vary during the day. I might be able to do something one day but not the other. I might be able to walk to the corner shop but not work an 8-hour shift. I might also feel able to do something one day, do it, and then feel terrible the day after. Apparently one of the worst things you can do if you have CFS is do much more than usual when you are having a good day, because it can instigate a “crash”, which can last for days or even weeks. This is something I have been doing, and something I need to learn not to do (definitely easier said than done when all you want to do is take advantage of a good day).

One thing I have been trying to do is be brave. I shrug and say “it is what it is” to friends who express sympathy. In reality, I am suffering, and I am struggling. Sometimes I find it hard to be sitting upright. Sometimes it takes a huge amount of effort to get out of bed and move the the lounge. Often pain radiates up my entire spine and into the base of my skull, all day, for days in a row. Most days I feel nauseous for at least a few hours. Sometimes I have done way too much and then pushed myself further and felt like I am going to pass out in the middle of the supermarket. My hands have gotten clammy and I have felt like I was going to throw up and my whole body was screaming at me to stop. I frequently don’t have the energy to hold a conversation. If I see a friend one day, and haul myself up and out of the house, walk into town for coffee, output emotionally energy talking and listening, and then walk back, I usually have to rest for a day or two after. I have to really plan when I make the effort to see my friends or family, or when I am active in general maybe doing tasks and chores or something else, because if I do that say, a day before a shift at work, I am going to suffer big time at work and may not even last the shift. Not only am I dealing with the debilitating physical symptoms, but also all the anxieties I listed earlier in this post and more. I am experiencing a loss to my identity. I don’t want to say a loss OF my identity because I am still the same person, but it is a loss TO my identity because I cannot do the things that I would do if I were not sick. I am not able to fully engage in being myself because I am unwell. It makes me worry what the future could (or could not) hold.

I also experience anxiety every time I commit to an event, every time I have a work shift, and every time I say yes to going out and doing things with people, because I am worried that I may feel utterly drained of energy, sick, and in pain for those things.

So with all that in mind, here are some points I would love my friends and family to understand:

• Some days I will be able to do things. Other days I will not. My energy levels are going to vary and so please do not assume that I can OR can’t do things – just ask.
• I may have to cancel plans. I may need you to come to my place so that I can use my energy to spend time with you, talking and listening, because I sometimes won’t have any extra energy to enable me to transport myself anywhere.
• I feel a lot of guilt for the above. I know that it is because I (probably) have a disability, and therefore it is irrational to feel guilt because I am physically unable to do as much as someone without a disability, but I feel guilty all the same. I feel embarrassed when I have to ask you to more than not make the trip to mine in order to hang out. I can even feel like a burden, and a crap friend.
• I know you will at some point find it frustrating (which is understandable) that I cancel or change plans or ask you to drive/walk when all you wanted to do was have me come over to you place, but I want you to know that the fact that I want to spend my limited energy having you in my company means that you are super important to me and I love you. I am always grateful for your effort to see me.
• Sometimes I may seem okay when we are hanging out. Maybe that is because I am having a good day. It might also be because I’m not going to spend the whole time telling you how awful I feel, and I’ve also gotten used to hiding it as much as I can whilst around other people.
• I am frustrated, afraid , sad, angry, and relieved all at the same time. I am frustrated with my body for not coping. I am afraid for my future. I am sad for all the things I will not be able to do and the events I will not be able to attend. I am angry because this feels unfair. After suffering with an eating disorder for 10 years I feel like I deserve a break, but that is not to be. I am relieved because suddenly everything makes sense and I have an answer as to why I am the way I am. It’s like I have the final puzzle piece and I can finally step back and see how everything fits together to make one big picture. To summarise, please understand that I am going through a lot of emotional turmoil as well as physical right now.
• I have an invisible illness, which means that I may look fine but that does not mean that I am fine. Just ask.

All in all, this is a rather difficult time for me and your understanding and support would mean the absolute world to me. Massive appreciation to all those who read the entirety of this post.