The hardest part of CFS/ME

For me, the hardest part of CFS/ME is accepting just how ill I am. I think part of the problem is due to the process of diagnosing the illness, you can’t just take a blood test and diagnose it straight away. It’s a process of eliminating everything else it could be, hence why it takes so long to diagnose. In my case my diagnosis took a year to get, which isn’t horrifically long compared to others, but it wasn’t until about 8/9 months down the line did I actually start to accept what was wrong. Every visit to the doctors just led to another possible reason for being ill that could be simply fixed, I guess that kept my hopes up that it wasn’t a more serious problem.

I’m not going to lie, it is hard being 21 and knowing I will probably never work a full time job – if I do it will probably involve flexible hours and working from home. Granted, it’s not as if I’ve seen myself as a 9-5 office girl but it would be nice to still have the option. Although I will get better from being as ill as I am, it is still an illness I will have for the rest of my life, I will have to constantly work at a routine that minimises flare ups as much as possible. There are lots of things you have to accept that don’t even cross your mind when you are healthy, like allowing extra time to get places in case I need to rest.

There’s other times when I just have to accept I will let people down like when I can’t make plans or I’m unable to do things I used to be able to. If I have a night out planned I know that will mean the next two days are a write off or at least a struggle. Sometimes I get so frustrated knowing I can’t do something, it feels like I’m losing my independence, but I have to just accept that I will have to ask people to help me. No one likes to think they can’t do something, its against your instincts.

Obviously it’s important to accept the restrictions of CFS/ME or else you tire yourself out more, but there’s more to it than that. It’s very hard to not get caught up searching for miracle cures that just don’t exist, I had to accept that this was my life now and I simply have to manage it as best as I can.

Its taken a while but I’m finally getting to a place where I can accept that CFS/ME will be a part of my life but it doesn’t have to ruin my life.

See you next time pals x

Invisible Illness

Before I knew about CFS/ME I was certainly ignorant to the concept of an invisible illness. I was often guilty of judging someone based on their physical ability, for example if I saw someone park in a disabled space who looked perfectly able, I would be confused and sometimes question their right to park there. Unless I was having a particularly bad day where I struggle to move quickly, it’s unlikely you would ever look at me and think I was ill.

That’s where the idea of an invisible illness begins for me, physically I look able and healthy, but internally I’m battling a number of symptoms. That mainly addresses what the term means to general people, but for the sufferer I believe it relates to all the symptoms that can slowly build up over time without you noticing. When I started suffering with CFS/ME I dismissed so many of my symptoms as other issues that could be fixed, I thought the tiredness was just a side effect of IBS or the flu like symptoms were just hayfever. I suppose a big part of this was denial as I didn’t want to accept that this was a bigger long term issue.

Now I have been ill for over a year I can notice my symptoms flaring up without even questioning them. Most nights I reach a point where I am so exhausted but I’m struggling to sleep, I will then get so restless and will struggle to find a comfortable position. Lucky for my boyfriend, I know. At first I thought this was just a habit but now I know that it’s a sign I haven’t rested enough during the day. The idea of having an invisible illness doesn’t just apply to the external or the observers, it lies with the sufferer as well. It is easy to forget that someone is ill when you can’t physically see it, there’s no sign that they are suffering. Sometimes I wish we were like sims and the diamond above my head could turn orange so people knew I wasn’t well that day, that way I wouldn’t have to constantly explain myself.

Realistically, I have never met someone who hasn’t been understanding when I explain I have CFS/ME. But of course this doesn’t prevent me from being anxious at the thought of having to explain to a complete stranger why I am sat in the priority seat and unable to stand for long periods of time. It is tiring having to constantly remind people I am ill, no one that knows me ever questions me on purpose, it is usually a passing comment or they’re worried something else is wrong. It may sound dramatic but sometimes it feels like all I am is my illness, especially when it takes all my energy just to get up and go to the bathroom. On the other hand, there are days when I can put on a smiley front and let myself feel as if everything is normal. Those days are the ones that keep me going with this illness, the reminder that this illness is a cycle and I will have days where I am better, even if they don’t last forever.

Nearly every time I have told someone I have CFS/ME they tell me they never would have known, now this is either a compliment to all my acting training or I really do appear okay a lot of the time. Hearing compliments like that is honestly so helpful when I’m feeling overwhelmed by my illness, it’s a reminder that there are people out there that have no idea I am chronically ill, to them I am exactly who I was before I fell ill.

This post turned out to be a lot longer than I planned, I had no idea I had this much to say on the topic. I hope it helped you see things from my side of an invisible illness, see you next time pals x

What CFS/ME ~really~ feels like

Imagine every morning you wake up and for half an hour to an hour you feel normal, then its as if someone drapes a heavy cloak over your shoulders that you have to carry round with you all day. That’s what living with CFS/ME feels like for me. Some days the cloak slips a bit and I can feel energetic, almost normal again, but these brief interludes only come occasionally and leave me remembering what it was like before I was ill.

One of the things I find hardest about this illness is its cyclical nature, some days I can be active and busy all day without my symptoms becoming overwhelming, however other days it is tiring to sit up and walking for five minutes requires a lie down after. Obviously these are extremes but they still form either end of a scale that my CFS/ME seems to bounce around.

In terms of symptoms, they break down into physical and mental. My physical symptoms obviously begin with extreme tiredness and include joint and back pain, sensitivity to light and sound, sore throat and headaches. When you hear of CFS/ME you wouldn’t expect to have such random symptoms. My mental symptoms mainly revolve around speech, forming a sentence and thinking of words is such a challenge when I am fatigued. Before falling ill my memory was particularly sharp, I have a slight photographic memory and always found it easy to memorise things at the last minute. Unfortunately since CFS/ME has set in, I struggle to remember the simplest things and its a frustration I never thought I would struggle with.

One of the biggest surprises for me when it comes to CFS/ME is how different it feels day to day and the frustration of making plans then being too unwell to actually carry them through. No matter how understanding people are it’s impossible to not feel like you’re letting them down.

In my next post I’m going to write about acceptance and how important it is when managing this illness.

See you next time pals x

Introducing ME

Who would I be if i didn’t start things off with a pun? I can’t take complete credit as it was my boyfriend’s idea, but it’s best not to let his head get any bigger.

To get the boring stuff out of the way, I was diagnosed with CFS/ME in June 2018 after a year of suffering with the illness. For people who don’t know what CFS/ME is, it stands for Chronic Fatigue Syndrome or Myalgic Encephalomyelitis and is defined by the NHS as a long-term illness with a wide range of symptoms, most commonly extreme tiredness. The definition is as vague as it could possibly be, but seeing as it affects sufferers in such different and unique ways, it is hard to give a precise definition of the illness.

Before I was diagnosed with CFS/ME I was a relatively normal student studying at University. I had a pretty active lifestyle having danced and played sports for my whole life. I have suffered with depression and anxiety for as long as I can remember and found these even harder to manage whilst being diagnosed with CFS/ME, as I suddenly lacked any control over what I was physically able to do. My knowledge of the illness was somewhat lacking, one of my older sisters also suffers from CFS/ME, so although I had watched her battle with the illness for several years, I really didn’t understand what it truly meant to have CFS/ME until I began to notice I also had the symptoms.

I want to emphasise how individuals can be affected in many different ways, so if you think you may be suffering with CFS/ME it is important to not get caught up comparing yourself to other sufferers. For me, CFS/ME affects both my physical and mental wellbeing whereas some sufferers may notice more physical than mental symptoms. I plan to write a post explaining in detail how CFS/ME affects me specifically as I think it will help people to understand the illness better and gain an insight to what is really happening when I say I’m tired or unwell.

My plan for this blog is to be completely selfish and create a space where I can write down exactly what I’m experiencing and recognise patterns in my illness. I also want to share this with people as I feel like there is a huge amount of ignorance towards the illness, not that that is anyone’s fault, it feels as if medical professionals know little about it themselves. I don’t want to completely restrict myself to just writing about illness as I feel like I have many more experiences to write about, but here just seems the perfect place to start as it is the forefront of my life.

I hope you enjoy reading about my life and learn something about CFS/ME, see you next time pals x