Another day off Sick

I went into work on the Monday but was experiencing a few annoying pains. I took some pain relief to try and make it all a bit more bearable. A mixture of pains and pain killers made for a rather dazed day. I couldn’t focus on what I was doing. I was no real use to anyone but at least I was there. Nobody knew the extent of how I was feeling; so as far as they knew I was having an ordinary day.

Was this fair? Was it fair to ”lead” on my colleagues?  Was it fair for me to be there?  Stupid questions went through my mind all day.

At least if I’m at work, I can’t be accused of having more time off. Does it matter that I don’t get much work done? From a work point of view, having me there working at a 10% capacity is better than not at all. This isn’t great for me though. As a chronic sufferer, I force myself into work a lot, more than I probably should. We all do; we may feel pants, but we’re capable of dragging ourselves into the office just to please our bosses and colleagues.

On the second day I couldn’t make it to work. I was hurting too much and hadn’t slept well at all. I think it was acceptable to take a day off. I spent most of the day on the sofa in a kind of warm squishy haze after taking strong painkillers. There was no way I could have worked feeling like this. I was much better suited to sitting on the sofa watching rubbish daytime TV and films.

When the pain begins to die down though, you become exhausted. At times I was too tired to chew. I literally struggled to move my mouth up and down. It was so bad I struggled to eat a piece of bread. It’s hard to explain this level of exhaustion to anyone, especially work. The exhaustive side of the disease is difficult to explain and quantify.

There are times when you are so lethargic that you cannot think, move or anything. That is how I am today. From the outside I may look lazy but I really have no energy. I’m writing this with difficulty. My eyes want to sleep and my arms are heavy. The keys feel too heavy to push down.

After that last paragraph I had to take a week out from writing this. My eyes got so sleepy and my mind so cloudy that I had to give up. I have taken it easy and relaxed; although I did make myself go back to work after 2 days off.

Returning to work was difficult as people always ask how you are. I try to be truthful by saying, “better than I was”. I guess that statement is true, but it doesn’t mean I’m fixed or cured, it just means I’m nearly good enough to work. “Better than I was” means people chuckle and then leave you alone. I soldier on through the deceit. I like to pretend I’m ok. I probably do this to attempt to fool myself more than anyone.

I have to be pretty general when I explain why I was sick. I can’t say I was too tired. I have to say my Crohn’s was playing up. This results in a bored look from the person questioning me, so bored in fact that they just leave me alone.  If I say I was too exhausted to work, they would respond by telling me how they are a bit sleepy. How can I explain that this is not how I feel? I’m literally exhausted. Too tired to think or even blink, I am not SLEEPY.

I struggled through the remainder of the week and made it to the weekend, where I recovered and built my energy levels back up.

I’m learning to feel less guilty about taking time off. Work took me on knowing about my illness. They knew I would require a few more days’ sick a year than most. I try to pull in some overtime to rectify my time off. In the past year I have got most of my projects in on time. However, you do hear some snide comments from management when they think no one is listening. Do I care? Yes a little, I am human. Will I let it get me down? No. There is no point.

Just before I go, I would like to share something with you. If you get tired at work, try not to drink caffeine as this can cause other problems with your bowels. Just get up from your desk or wherever you spend the majority of your working day and go into the toilet and just stand in there for 2 minutes. People are so used to us crohnies going in and out of that little room all day, that they do not find it weird. You can then take a 2 minute break without worrying someone is monitoring you. You can unwind in your natural home. Splash some cool water on your face or text your friend or loved one. It breaks up your day and gives you back 2 minutes. I find myself doing this nearly once an hour.

Stay well

Ben x

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7 Responses to Another day off Sick

  1. Deb says:

    Thank you! You have hit the nail right on the head. I am fighting a flare since diagnosed 2 years ago. Healing inside slowly but still having awful pains and now my liver and pancreas are irritated causing more pains. I am so tired trying to explain that I am too tired to do anything and getting the same canned reply. “Oh I’m tired too.” I want to scream.

    • Ben says:

      It is so frustrating to hear “Im tired too” or “I have a bit of tummy ache”. Some people don’t seem to grasp how bad this can be for us.

      It makes me lie or at least sugar coat my responses. I find myself being very nice and polite. I know the world doesn’t revolve around me, but sometimes I would like a bit of sympathy without hearing the same rubbish from the person we are speaking to.

      Hope you find your way with the pains. It does get better. It may be a slow process but one day you will find a happy medium.

      Take car

      Ben x

  2. Callie says:

    Hi Ben, I can totally empathize and I totally know what you mean and how the word ‘exhausted’ even doesn’t quite explain the level of extreme fatigue we Crohnies feel. I’ve had Crohn’s for apparently 18 years but was only (finally!) diagnosed 6 months ago when they realized there was a reason my complex fistulas weren’t healing. So on to Remicade I went as I was told no other meds would work to address the extensive/complex fistulas I have. I too have heard ‘I’m tired too’ when I dare mention how thoroughly exhausted I feel at times; there is no understanding from my boss and colleagues. I’m actually allergic to Remicade but since they can’t put me on anything else, I go through 4 days post-treatment where half the time I’m a total zombie from non-stop Benadryl dosing and then another 2 days where I have trouble getting off the couch. I have trouble even understanding what people are telling me and I have trouble formulating thoughts, let alone words. This last treatment I had to go into work on my day 3 post treatment…my boss said I sounded drunk (I was still so tired, I had trouble moving my mouth). I also get the lovely delayed allergic reaction a week after my treatment and with it another few days of extreme fatigue. I’ve described it as hitting a wall; despite all my best intentions I literally cannot force myself to compensate for this fatigue, like I might have been able to before Remicade (and Imuran in my case-I take both). I actually feel nauseous if someone is talking to me and I’m supposed to respond as the effort to do so is too much for my body. Like you, I push myself to go into work because people stop being sympathetic after a while; they just don’t understand what CHRONIC means – this is for life. No ‘getting over it’. Even if I do get into remission (which by the way, still has not happened) I’ll have to stay on Remicade as I’ve been told the moment I’m off it, the complex fistulas will return. At this point, I just want to heal the ones I have: I dare not even hope for on-going remission. I miss taking a bath and swimming in a lake, but because of the open wounds, I’ve been told that is a no-no. Anyhow, thanks for letting me vent on your blog! (sorry about that!) It’s nice to ‘talk’ to someone else who is going through this. I’m still new to the whole Crohn’s world and have not found a support group in my community yet to discuss some basics of living with it, and living with Remicade (which has it’s own fun challenges). Wishing you a great week ahead Ben!

    • Ben says:

      Diagnosis can take so long. I often wonder if certain things could have been prevented if tests had been done earlier. I suppose we’ll never know and it’s probably best not to dwell on these things and just soldier on.:)

      When I was on Infliximab (I think that’s the same as Remicade) I would have a type of hangover for 3 or 4 days. These slowly got better and not as intense as I progressed with the treatment. I think I was allergic to it but it was stopped for my operation before we really found out and was never restarted.

      The fatigue is crippling at times. Im not sure everyone comprehends how bad this can be. It’s not an exageration; we literally cannot lift limbs.

      Remission is out there. You just gotta remain positive. I saw nearly 6 months with no real symptoms as such. Not sure what triggered me off again, but even in my current status I am not as bad as I have been. So the meds and/or my diet have really started doing something useful..

      Do you have a Crohns and Colitis UK group near by? They are very sueful. If not, visit their website and get some details. They have lots of useful leaflets, telephone numbers etc for you to use for free. Twitter is also a great community of Crohnies. Loads of like minded people all talking openly about their bums! he he

      Take care and I hope you see some light soon

      Ben x

  3. Nicola says:

    Hey Ben! I’m just new to crohns disease and have just recently been diagnosed. My dieticians have put me on a liquid diet for 8 weeks which rests my bowels and also calms my inflammation. As you’ll know everyone has their good and bad days while coping with the worry and stress of crohns, I’m very interested in the twitter thing as I think it will help ease my worries by speaking to people with the same condition. I’m struggling a lot, I live with my gran and we’re both finding it hard to come to terms with it all. I feel like my lucks run dry because I’ve also got a heart condition and I’ve had that since I was 3.. so I think ‘why me?’ But you’re site helped because I understand there are loads of people out there willing to talk openly about this and give loads of advice! Wish you all the best as each day goes by x

    • Ben says:

      Hello Nicola

      It’s nice to hear from you. I really hope Twitter helps you. I find it a massive help. Search for #Crohniehugs and you will see sufferers offering support and a friendly comment to help you through some of the rough days.

      I found my family struggled to understand my disease. That was pretty difficult. So I can understand it may be tough for your Gran to come to terms with it all.

      You just have to remember not to let it control your life. Be in control. Be happy and accept that your bowels may be sad alot. It’s the only way. If you dwell too much on any health problems, they end up ruingin your life. You need to enjoy it as much as possible.

      I hope the liquid diet helps. I know it’s tough but be resilliant and dont stray from it. The dieticians can be brilliant. You will soon learn what your body does and doesnt like.

      I wish you well with the heart and Crohn’s

      Be strong

      Ben x

  4. Alison Forge says:

    Hi Nicola,
    I just want to second what Ben has said, I was diagnosed with Crohns Disease when I was 20 years old, that is over thirty years ago and without going into my medical history have also over the years had various other medical conditions to add to this including Cancer.
    In the early days I believed everything I was told and it was pretty damn grim … but over the years I found that by finding a way to let go of worries and past events, gaining a better understanding of the mind/body link and putting in place some proven techniques my health and life improved in all areas. I hope that you will be inspired to know that I now lead a very normal exciting life, travel all over the world and do some amazing things.
    Wishing you peace of mind and good health
    Alison Forge

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