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Learning to live with a chronic condition

Fair warning – this is just a dump of the thoughts and emotions one goes through. Everyone will be different, with different conditions, severity, prognosis and circumstances. We all go through a learning curve. If you are in this space in your life, drop by and say “Hi!”. If you have a friend or family member in this space right now, be gentle. I think we try to act tough, but it isn’t always good for us to do so. We have to learn our new limitations and we appreciate your support. If you usually run 10 kilometres a night, spare some time to just walk gently with your sick friend/sister/mother/son/wife. Even if we say no, we’ll be fine.

Today I am home for day three of being off work – again. For me this is perhaps the hardest part. This latest hiccough started on Saturday: I felt a little tired but otherwise OK after what had been a relatively good, stable week at work. Managed the Vic Market shopping, with the help of Mr O Jnr 1, with no problems, but at Costco I suddenly needed to spend time in the porcelain palace. Considerable time. Sunday I suddenly got a sore left calf and could hardly walk. Why? I have no idea. Monday I woke up feeling fatigued and lethargic and still had a sore calf. I went to the GP who wanted to give me three days off and I said, no, two will do (will I NEVER learn).  I called my rheumatologist who fitted me in on Tuesday.

Flowers from today’s walk

This morning was supposed to be back to work for me. But I woke feeling less than great, to put it mildly. So I have taken the third day. While I feel I am letting my co-workers down, logically I know that if I don’t put my body first, I’ll pay for it by being not as well as I could be for longer, which is no help to anyone, least of all ME! But that mental struggle continues. I haven’t yet adapted to putting my health needs first. I just end up feeling guilty. I know telling work I’ll be off for two days when I should have just accepted it would be three doesn’t help them plan around me.

I can do things in fifteen to thirty minute blocks on days like yesterday and today. Nearly but not quite. I can write because I can pick it up and put it down as I feel like it – there is no “must get this done for the 11 am teleconference”. If I don’t hit the publish button for two days, it doesn’t matter. But writing is therapy and makes me feel as if my brain is still functioning – at least some of the time.

My biggest battle, I think, is balancing what I need to do for ME, such as get the exercise my doctors want me to get, and reserving energy for work. Yet it feels like a catch-22 because exercise is the best way to boost energy levels. For a healthy person anyway. If  am not careful with exertion, I can easily overdo it and crash the next day which helps no-one. I get home too tired to exercise, yet if I could just get out there perhaps I wouldn’t be so tired. Vicious cycle.

I don’t look sick – most of the time. There was a day a couple of weeks ago where a peer looked me straight in the eye and asked, “Should you really be here, you look white.” This was a result of my going off the predisolone and ending up in pain again. What had happened was one day every joint from my waist down was killing me so I’d gone to the GP and his advice was start back on the a lower dose of the predisolone and see if that helped. Oh, it helped – wonderfully! But as the specialist had said only take it for five days for the initial trial, I stopped after seven days. And crashed. Even driving the car home was incredibly painful. Back on the predisolone, pain miraculously disappeared and I was back on track. I gradually reduced again and down I went – which lead me back to the specialist’s office yesterday. Predisolone for three weeks, if that works we look at a different drug for long term use.

This isn’t the sort of illness (and many chronic conditions aren’t) where you are flat on your back in a hospital bed sleeping eighteen hours a day. To all intents and purposes you look perfectly OK most of the time. The brain fog and lethargy/fatigue are probably my biggest problem and I am sure the main day-to-day problem for many people, especially those of us who make our living using our brain power rather than our brawn. That is hard to explain to people – or should I say I find it hard to accept other people understand. They probably do understand better than I give them credit for, but I feel stupid, guilty, incompetent – name a negative emotion and I feel it.

My boss has a better understanding than I give him credit for, I am sure, but I still feel crap about it. I am sure I end up over explaining. Hopefully this three week plan will settle things down.

I look back to when I initially took the predisolone for the five days. As I said to my specialist yesterday, looking back on that time now, I realise I was so sick with the thyroid and gastrointestinal stuff, I was spending a lot of time in bed anyway and probably wasn’t in a fit state to be testing rheumatoid arthritis treatment. Now I am back at work and the thyroid is being managed, the difference between being on and off the predisolone was clear – very clear.

The psychological war I wage with myself is draining. The little person on my left shoulder says, “GO TO WORK!” The little man on my right shoulder says, “Don’t be stupid, you need to get right first, otherwise you’ll just drag yourself down.” If I write, as I am doing now, I feel guilty: “If you can do this, you should be able to work.” But this doesn’t have to be right, no-one is waiting for it, I can pick it up and put in down any time I feel like it. Being able to do it at all reminds me I am still a functioning human being.

I’m off work today – I should (and will try) go swimming or go to the gym. But even THAT creates an internal battle: “You can’t go to the gym if you are off work sick.” This logic is ludicrous in my case, because I am under medical instruction that exercise is vital. I can’t throw off the values of a life time: if you are too sick to work, you are too sick to do anything else. Well, yes, if you are off because of the ‘flu. Get used to the fact this is different. Follow the doctor’s orders, you stupid woman.

Meds that are set, as are the thyroid meds, are easy. Meds that have to be tweaked: not so easy. We are in tweaking mode for the rheumatoid arthritis and personally I find that frustrating. Just give me a pill and make this go away! Reality isn’t like that. I have to be a patient with patience. Trial and error. Take notes for my doctor. Take responsibility for my own role in this battle and not try to think I can do it all because that is not possible right this minute. Listen. Behave. Do as I am told.

I email my specialists. I’m not sure if they are used to patients who email updates, but it helps me document in real time.

There are the financial aspects. I hadn’t budgeted for $100 of the co-payments Sussan Ley seems to think not enough of us make. Luckily I could afford it, but what if I was one of the people who just couldn’t afford an extra $100 this week? I am constantly reminded of those less fortunate than I. I think of those whose conditions are worse or who are suffering a terminal illness. I think of the ones who must decide between feeding the kids or seeing the doctor unexpectedly when things go wrong. I think of the ones who must wait in queues in public hospitals because they are unemployed or disabled by their conditions. Realistically I am still one of the lucky ones.

Fear, I have realised is a big factor. Fear of the unknown: will I get worse, will the condition stabilise? Will I ever be able to perform at 100% again? Do I have to set a new 100% now? Don’t underestimate the mental adjustment required. I bought myself a VivoFit band as motivation to get that much needed exercise. Even that is a double-edged sword. Positive motivation in that I want to hit the numbers, but negative psychologically if I’m not up to hitting the numbers: then I feel guilty, frustrated and worry about calories too much!

This morning I read an article about a woman with a different condition, but I felt for her so much. Like me, she is trying to live as normal a life as possible under difficult medical circumstances. Her name is Sam Cleasby and you can read her original letter at To the woman who tutted at me using the disabled toilets…. A video of Sam speaking at Barnsley Town Hall for International Women’s Day is at the end of this article.

Carly Findlay

Carly Findlay

This is very different to the situation Carly Findlay lives with. I have mentioned Carly before. Carly has ichthyosis, a clearly visible skin condition. While Sam will get accused of misusing the disabled toilets because she doesn’t look disabled, Carly gets told not to get so sunburnt. Both these women are actively working to educate the community and help fellow sufferers. Carly has recently organised the Australian Ichthyosis Meet for patients and their families.

Sam and Carly face much tougher challenges than I do and I find them both inspirational. I hope one day I reach their level of serenity.

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13 comments on “Learning to live with a chronic condition

  1. Hi Robyn, I suddenly thought of you today and how we used to ‘debate’ certain issues on twitter. As I hadn’t seen you for a while, I Googled you and found that you’re having a new challenge. Stay strong, I know you’ll get through it. All the best.

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  2. Living with a chronic condition is hard. Having had to do this for 15 years now I know how it feels. Especially the way other people perceive you. I have good days/bad days/days I hide from the world. So people usually only see me about [except for close friends & family who are about on the really bad days] on the better days. They don’t know that sometimes I fear leaving the house because if I have to do a number two I can’t actually reach to wipe my bottom because of the pain. They don’t see me rolling around in tears trying to find a place that hurts just a little bit less than the one I am in. I see the judgement in their eyes and it hurts, because deep down I know that in reality most people only want to see your happy face. It is the face I put on when I leave the house or when someone knocks at the door.

    The saying ‘walk a mile in my shoes before you judge’ is so on the button.

    Liked by 1 person

    • Thank you so much Jo for sharing your experience.

      People only want to see our happy face is so true, isn’t it? People do care, those close to us and those not so close, but illness is something we generally find confronting. When it is invisible, it it so much harder for people to think we might be ill.

      It is a tough path, but I have to say my company and my co-workers have been wonderful!

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  3. […] I’ve joined the VivoFit crowd. I mentioned this the other day in passing. I don’t need some really expensive piece of equipment to keep track of my activity levels, […]

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  4. People used to be able to afford four weeks annual holidays (or more!) plus sick leave, several weeks if needed. Are people’s working lives more stressful these days?
    With a chronic condition like yours, dear Robyn, I wonder whether some long, good holidays, less visits to GPs and specialists, a natural diet, calm surroundings etc might be a start to recovery. The pain you experience is maybe just telling you that you need a break. Pain like this can be kept in check with drugs for a while, but is probably just numbing it. If too much stress is the cause of the pain. would not perhaps meditation on a regular basis help to make you feel better?
    What can you look forward to? Maybe some great family celebrations? Just let your family spoil you a bit. You deserve it! 🙂

    Liked by 1 person

    • Thanks Uta. Sadly I’m using annual leave in place of sick leave because I’ve run out of sick leave, so no holiday for me. I have rheumatoid arthirits and a hyperactive thyroid, Uta, plus diverticular disease. The thyroid needs meds (or surgery, but meds less invasive) and rheumatoid arthritis is the the subject of much research. There is research going on around gut bacteria, urinary tract infections and probably a heap of other research! Stress can be cited by 80% of auto-immune sufferers BEFORE they became ill, yet no causal link has yet been established. Certainly living has healthy as possible (food, exercise, etc) helps, but it is not a cure.

      Liked by 1 person

      • It sounds to me, Robyn, like you’re doing all the right things. Of course you want to be as well as possible. A lot more research needs to be done, this is for sure. But at least you have access to good professional help. It is good when you can count your blessings, like going for walks and taking pictures of beautiful flowers.
        I wish you all the best, dear Robyn. Have a lovely, peaceful weekend with some enjoyable walks! 🙂
        Love, Uta

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  5. I’m not ticking like but I am here reading.

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  6. Those ‘invisible’ chronic illnesses aren’t good – not least because the invisibility of them makes it difficult for others to actually see what’s going on (including, on my experience with allergies, sometimes doctors). Hope everything works out for you and things settle down! All the best.

    Liked by 1 person

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