Tag Archives: chronic illness

We don’t know what someone else is going through

Someone recently said to me that they thought they managed tiredness better than I did. I thought this was an interesting observation and here’s why:

When they’ve had a bad night, not slept well, they feel pretty tired, exhausted even – they manage to get up, go to work and they’re only moderately grumpy. I’m not denying, they manage their tiredness pretty well.

Woman sitting up in bed with her head in her hands looking exhausted

However, they experience my tiredness making me very grumpy, fuzzy headed, lethargic, at times not able to string a sentence together and struggling to do simple daily tasks. What they don’t realise, what no one can understand, is that when my tiredness has got to this stage, I’ve come to the end of my spoons, I’ve borrowed spoons from tomorrow and probably the next day. I’m not just exhausted, I’m completely drained and I’m at a negative level of energy reserves!

Their experience of tiredness is my experience of normal. Even if I manage to sleep I still do not feel refreshed. Chronic fatigue means just that, I permanent state of exhaustion – everyday, I have to wade through thick fog but I function like anyone else. I go to work, I socialise and I go about my daily life and manage to hide how little energy I have. This is my normal, I’m completely exhausted every single day of my life but most people think I’m “fine”.

What this person experienced as me “not coping as well as” them was me experiencing an extremely debilitating symptoms of chronic illness.

Computer generated image of nerve cells communicating pain

I’m always intrigued by the question asked by physicians when managing pain. “Can you rate it out of 10? 10 being the worst pain imaginable and 0 being no pain at all.”. Some say child-birth is the worst pain and woman can experience, while others say renal colic is worse. Others would say nerve pain such as trigeminal neuralgia or 2nd degree burns are worse. I think most people would agree that many factors influence our experience of pain, such as how long we have to endure it and the outcome.

I have not experienced the pain the causes people to writhe in pain (such as renal colic) but I have experienced fracturing my spine so severely I couldn’t move and simply breathing was painful. Surely, the only conclusion we can draw is that one person’s experience cannot be compared to another?! (The physicians question is, of course, just a guide, and it is useful when assessing whether pain management is working.)

My point is simple – we may think we know what someone is going through, from their behaviour, we may think we know how they feel but we can never truly know. Don’t judge how someone else is coping against what you think they’re going through.

Illness and wellness are not binary

Illness – a disease or period of sickness affecting the body or mind.

Wellness -a state of being in good health, especially as an actively pursued goal.

I was ill with anorexia and depression for many years. I spent a long time in recovery, making steps towards wellness, it was a tough journey but I got to the point where I felt I could say I was recovered a couple of years go.

A stable mood, a stable weight, a life focused on the future rather than having to focus on managing my mental health and many other markers of freedom have been reached.

But I still have to do a lot to manage my mental health. To maintain my mood I need to manage my weekly and daily routine so that I manage my energy levels, get enough rest and carefully consider how much stress is acceptable and what activities I can manage. I practice mindfulness as it helps me stay in the here and now rather than panicking about the future or dwelling in the past.

To stop myself spiralling into anorexia, I have to eat regularly but avoid rituals or strict habits. Over eating and under eating are ok but I must always be on the watch for the “anorexic voice” – it’s easily triggered by today’s diet culture chatter and irresponsible social media postings.

I am no longer “ill” and I “actively pursue” wellness.

I have heard some people say they are chronically ill because they will be on medication for the rest of their lives. I have tried coming off my medication, tapered gradually, but my symptoms returned. I have had to come to terms with the fact that I will probably be on medication for the rest of my life – but I don’t consider that to be the definition of illness.

Someone who has high blood pressure usually manages their blood pressure with lifestyle and medication in order to keep their blood pressure within normal limits. Someone who has diabetes uses lifestyle, medication and/or insulin to keep their blood sugars within normal ranges. Equally, I use lifestyle and medication to manage my mental health.

Even though I continue to need to manage my mental health I don’t think considering myself as an ill person is helpful. For some people, holding onto an identity as an ill person can have a negative impact on self esteem and ability to develop and grow as a person. But if I consider myself well and/or recovered, there’s the risk I might take my eye off the ball and not give my health the attention it needs.

So if I am neither ill nor well, what am I?!

Maybe I don’t need a label for what I am!

Sometimes I am more well than others – I have to work hard to stay well, that does not mean I am ill. I do not have to let this define me. I’m learning, despite what some people will have you think, not fitting into a category isn’t a bad thing!

You might not realise how much goes on to manage a chronic illness

I’ve got a new colleague at work who’s made some assumptions about me, mainly based on how old she estimates I am (that is a lot younger than I actually am…). Aside from me feeling a little exasperated by her brash insensitivity it’s reminded me how lonely it can feel to live with an invisible illness.
At one point, office talk turned to what time is bedtime and a comment was thrown my way by this colleague, “I can’t stay up late like you young people” (I was the only person under 50 in the room). Aside from the fact I’ve always felt more of an affinity with morning larks than night owls, I’m not a “young person” who can “stay up late” because I have disordered sleep that requires a strict bedtime routine that ideally starts 9/9.30pm.
This led me to think about what else people don’t really see, what do I have to do on a regular basis just to get by, to live, as normal a life as possible? Here are just a few examples of activities I do to manage my health:

  • Weekly portioning out of medication (currently 7 different types, up to 30 tablets a day), counting and checking stock levels – running out simply is not an option!
  • Monthly order and collection of medication – I can use a handy app to do the former but I had awful problems with a delivery service of the latter so currently physically go into a pharmacy to pick up my medication every month (or more often if I’m taking extra prn medications).
  • Sorting out medication changes – recently upon collection of a regular prescription I was told the manufacture of one of my medications was locked. Multiple telephone calls and visits to the pharmacy later, I have a temporary prescription for a different strength (meaning I have to take 10 tablets instead of 4!) and will have to continue following this up until the manufacture is unlocked or a more permanent solution is found.
  • Daily physio at home, regular session in the gym and regular appointments – everyone should exercise for its health benefits but in my case it’s vital I keep my joints supple and my muscles strong to limit pain. Unfortunately exercise is incredibly time consuming so it is something that I skip if I’m busy but I really shouldn’t – would you ever hear someone, on regular medication for a chronic illness, say “it’s ok, I’ll skip a couple of days medication, no problem”? No, we wouldn’t! So, equally, it’s not ok for me to skip exercise.
  • Planning – I’m still learning this one! It’s really difficult to know how much energy I’m going to have in advance. I do know I can’t have back-to-back commitments all weekend and be fit for work on Monday. Making sure my diary is well balanced takes time in itself – sometimes I have to make sure I do things like cooking/shopping/cleaning in advance to take pressure off busy times.
  • Attending appointments – time and again I’m exasperated by our health system being designed for people who don’t work. I was booking an orthopaedic appointment recently and when asked when would be convenient, I said “first thing in the morning, please”, thinking before work would be the least disruptive option. I was offered 11.40…need I say more?! At times, I’ve had to take annual leave for appointments, it’s been the only way to fit them in. Don’t get me wrong, I think the NHS is amazing, I just find it difficult when I’m penalized for being ill.

These are, of course, just the practical things I have to do – there isn’t really any accounting for the mental energy it takes to manage a chronic illness so I’ll just leave that thought with you!
I do not feel sorry for myself, this is my normal and I’m used to it! I just think it’s important not to judge someone on what you can see. Someone may turn up to work every day and to all intense and purposes look like a “healthy young person” but unless you know them, you won’t know what lengths they have to go through every day.
Please make a comment below if there are things you have to do regularly to manage your chronic illness.