Category Archives: Fibromyalgia

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.

What’s a Spoonie?

The spoon theory is a way of explaining that people With chronic illness or disability have fewer units of energy to do daily tasks and use more energy doing them, than other people.
There are 4 reason why I struggle with energy levels:
1. I’m an introvert in an world built for extroverts, my energy is sapped by other people – this is no one’s fault, just the way it is!
2. I’m a high sensitive person which means I take in the world around me and have to process it in a lot more detail than most people. A mild smell, quiet sound or moderate level of lighting to someone else is overwhelming to me and can lead to a migraine.
3. I have chronic pain in multiple parts of my body. Anyone who’s been in pain, just for a day can testify, it’s draining. Strong painkillers only take the edge of my pain, I am never pain free.
4. I don’t get restorative sleep. Most people go down through different levels of sleep, each of which have their benefits, but I do not reach stage 4 sleep which is where repairing and restoration happen.
I wake up in the morning and I’m exhausted. Unless they find a cure, this will be how it is for the rest of my life so I’ve got to find strategies that work!
Because my body doesn’t function optimally I use a lot of energy just keeping it going.
The spoon theory works like this:
Someone without a chronic illness would wake up with 25-30 or so spoons worth of energy, they use a spoon for their morning routine, a spoon to get to work, a few spoons for their morning at work, they’re replenished by eating lunch, they use a few more spoons in the afternoon and have some spoons spare to enjoy the evening. Even on a tired day, perhaps at the end of the week when they may wake up with less energy, you can see that they have enough to get through the day and don’t really need to think about how they spend their energy.
I, and other people with chronic illnesses and/or difficulties mentioned above, wake up with, maybe, 15 spoons. I use a spoon to get out of bed and dressed, if I need a shower, that’s another spoon used. I may use 4 spoons at work but if it’s been particular busy or the alarms are triggered more often, I might use 6 or 7 spoons and another to get home. If I have to run an errand, that might take 2 or 3 depending on what it is – doing the maths, I could be down to 3 by the evening. Spoonies have to save a spoon for getting to bed so I have 2 precious spoons to use in the evening. It may take me a whole spoon to make dinner, if I have a migraine or pain is particularly bad spoons just disappear from my reserve.
Some, but not all Spoonies are able to borrow spoons from the next day, if, for example, they know they can have a lie in or can take time to rest. This is an incredibly risky strategy as it’s not always straight forward. If I push myself today, using just 1 extra spoon, it can cost me 2-3 from tomorrow.
Spoonies often have to use energy managing their illness, for example, regular physio, taking medication or attending appointments.
Different people use different amounts of energy for the same thing, for example, I find 5 minutes of being with noisy children wipes me out, other people can last longer!
I hope this makes sense, it’s really difficult to explain to people who don’t experience it but I’m trying!
I’m not lazy, I’m not flakey, I’m a Spoonie.
Spoonies have to think more strategically about what they do when in order simply to make it through the day!
I do not feel sorry for myself – that would use more energy! I’d just really like it if people could understand!
For Spoonies out there, feeling at a loss, I have a few tips that help me:

  1. I use a lot of alarms on my phone – this means a) I do not have to use precious spoons trying to remember things and b) it means I remember to do things that help, like take my meds!
  2. I have routines (especially morning and evening) and I stick to them, this uses fewer spoons because there’s no decision making and I have to think less about what I’m doing.
  3. Strategically placed coffee – I’m fortunately that caffeine helps, it doesn’t help everyone but without it, I simple could not drive to work safely (believe my, I’ve tried, not good!) Some people find particular foods make managing energy levels better or worse – I’ve not found this to be the case for me.
  4. It’s ok to say “no” – if people judge you for saying “no” to something that’s going to cost you spoons you don’t have, that’s their problem.
  5. Work out what replenishes your spoons and do it! Although I don’t get refreshing sleep, I need to be in bed, resting for at least 8 hours. A couple of hours lost doesn’t just mean I’m tired the next day, it means I struggle to function, will have to borrow spoons and so the problem continues for many, many days! I also need rest time, down time, time out, me time, call it what you will – I need regular evenings of it!
  6. I write lists so I can plan my energy usage.
  7. If I want to do something I know will use a lot of spoons, I try to prepare by getting more sleep and making sure I know the plan so I can try and pace myself. It doesn’t always work but I do my best!
  8. Make sure you surround yourself with people who try to understand. They can support you to use your limited spoons wisely.

Spoonies do not own the monopoly on tiredness, it’s just a way of explaining the extra considerations we have to give to managing energy levels.

“You’re so lucky!” Really?! Am I really?!

Teensy bit of a rant alert…!
If I happen to mention that I work part time, people, more often than not say “wow, you’re so lucky!” When I’m heading out of work early afternoon on a Thursday, wishing everyone a “good weekend”, people say “you’re so lucky” with a tinge of envy.
I must say, I’m incredibly fortunate that my husband and I are in a position where we can afford for me to bring in a part time wage but I’m not sure where luck comes into that. My husband has worked very hard to get a good job and he continues to work hard to bring home a comfortable wage.
I wonder if people forget that I only actually get paid for the work I do, it’s not like my company has said “yeah, we’ll keep paying you full time but you don’t have to come in every day”! I’m not on much above the hourly living wage for, what can be, a pretty full on job – and this is pro rata!
There are many reasons why I am part time, the one that benefits me the most is that I have time to look after my health. I have had serious mental health problems and currently suffer from arthritis and fibromyalgia so I live to constant severe pain and punishing fatigue. Working full time, I had limited time to look after my health, I need to make time for regular exercise/physio session and plenty of time out.
Lots of people can manage their chronic illnesses by taking a few pills – I do have a lot of pills to that but I also have to do regular exercise sessions, this take quite a bit of time out of my day and just like you’d never expect someone to miss a few days of their pills – nor can I miss a few days of my exercise regime.
When working full time, it was really hard to physically fit exercise sessions into my day, let alone feel motivated to do it because work was taking such a toll on my mind and my body. If I did manage to fit in a session, it was usually at the expense of a social engagement or other activity I would have liked to have done.
So, in order to properly look after my health, working part time is our current solution, if I continued full time, chances are, I was heading for a crisis and would have needed me to take time of work sick and when it comes to chronic illness, this may have led to me being off work permanently.
So, if “lucky” is, waking up with fewer spoons than other people, being in constant physical pain, struggling with brain fog and pervasive fatigue (but having to go to work anyway) and having to go to the gym 5 times a week to manage the symptoms of my chronic illness, then yeah, I guess I am, very lucky!