So I haven’t blogged in a while. Why?… Because I faced the dreaded relapse. I didn’t feel comfortable or well enough to blog during this time – I like to keep my blog as positive as possible. On reflection, this seems ridiculous. How can I spread full awareness of my story with the debilitating conditions, Chronic Fatigue Syndrome, Fibromyalgia and Pernicious Anaemia if I don’t share my lows as well as the highs? So, here we go…
Last April I returned to my job and I felt on top of the world and ready to tackle this milestone in my recovery. I was feeling much fitter due to working out regularly, being careful not to push myself too far as this in itself can cause relapse (as mentioned in ‘A Piece of the Puzzle…’, everyone’s limits and experiences of having my conditions is unique so it is important to find the right level of exercise for you) and following the Ketogenic diet which seems to suit me and helps boost my energy levels (read more about that here). I was lucky enough to have a phased return over two months and at first, things were going well. It was so nice to have that side of my identity back.
However, as time went on, I began to realise that getting back to full time work seemed an unachievable goal. I was fortunate in that I was given the opportunity to change my contract to part time but for the good of the service, my days had to be consecutive and full days as opposed to more frequent half days. This seemed doable but unfortunately, in my current state of health it was not sustainable, yet I was reluctant to acknowledge this.
Physically, I could feel it. Every day felt like a battle. To get through it without a nap was difficult. I would flag every afternoon and struggled to maintain concentration in order to complete my paperwork. My pain worsened leading to an increase in my medication (which I hate. I strongly believe in the non pharmacological approach to recovery) and something I am ashamed about… I went back to my old ways of relying on quick ‘pick me ups’ through eating sugary foods and drinking a lot of coffee. I gained weight, became more unfit and miserable, and just felt like everything was falling apart again.
Emotionally on the other hand was a different story. When I was off sick the first time, my focus was always to get well…to get back to work as I am so passionate about Occupational Therapy and I adored my job. In my head, the worst case scenario was that I would have to go part time instead of full time. Not being able to work at all just wasn’t an option. I was becoming upset and annoyed at myself during my phased return as I didn’t feel I could be the perfectionist I was there and work to the standard that I once did. I felt frustrated, like I was trying to live my old life but with my new health conditions and it wasn’t working out too well. Nevertheless, I couldn’t accept that this was a sign that I was relapsing and still prioritised getting back to a normal routine at work even though I needed to use all of my days off to recover.
Eventually, because of the increased pain, I went back to my GP who was quite firm in pointing out that if I didn’t go off sick again, I would end up as poorly as I was last time and I only have a chance of recovering if I take the time I need to get well. Finally, I reluctantly listened…
I have decided and work have agreed for me to take a career break for a year, returning to the trust that I work in when and only when I am healthy enough to do so. Several people have said that I must be happy about this… I am happy as I know it is what I need right now and it is the best thing for me in the long run but I wasn’t jumping for joy as expected. The opposite, I was heart broken at the decision. Not because I don’t want it to happen but because it is not what I wanted a year ago. It is not what I planned for my career and I feel sad that I have had to move away from my plans.
Lessons I have learned from this experience:
• Returning to work can be extremely difficult for someone with my conditions and it is important that phased returns are done slowly and carefully.
• It is important to prepare well for returning (I was not prepared enough). Next time, I will make sure I have plenty of support in place to learn how to pace at work and gradually build up my tolerance safely.
• Don’t be fooled by false hope or appeared ‘wellness’. I felt really well before returning to work and this was because I learnt how to rest and pace myself in my home environment. Applying these skills to a work environment is hard but so important to do, even if you feel well at first. If not, your ‘good health’ will not be sustained and trust me, it feels rubbish and if you are like me, you will blame yourself.
• Don’t be too hard on yourself! So things are different and you have to adapt your way of doing things… So what?! I really struggled with this but a wise women recently told me not to worry, it is fine to take the slow road to my destination, I will achieve the same goal eventually.
• Try not to slip into old ways, even if they are coping mechanisms. I had negative coping mechanisms (sugar and caffeine). Yeah, they help at the time but hinder performance in the long run. Also, make time for more positive coping strategies. Doing a tiny and safe amount of exercise really helped with my nerve pain, even if just for a short time before I needed to nap. By getting back into the work, crash, work, crash cycle, I stopped moving and strengthening my muscles and joints which led to more pain and deconditioning.
• Prioritise your health!!!! This is the big one. Looking back, my return was unsuccessful because my focus was on returning to work, not on staying well. Now I realise that if I work on my health, my ability to achieve in my career will come naturally.