WORKING WITH CHRONIC ILLNESS
The motivation for this post is through the struggle that I have had just 2-3 months into a full-time job and the emotional impact of accepting that I’m not invincible. That I can’t do what everyone else does and the brute of asking for help.
I started at Harrogate Hospital as a Physiotherapist at the start of December. I am currently on the respiratory wards and so I am occasionally in contact with Covid patients. With now having 4 Covid vaccines and with all the PPE, I have never felt unsafe, and I am lucky not to be on immunosuppressants at the moment.
Before I started, I thought I wouldn’t be able to last even 1 week, I didn’t have any faith in myself at all. If it wasn’t for my loved ones and their support, I don’t even know if I would have buffered up the courage to start. The fatigue was always going to be a big hit and it was – but getting myself into a routine and pacing myself on my time off work, I was doing okay. At work, always just wanted to do the best I could and be the most helpful I could be for the patients, I was putting my body in difficult positions, I was kneeling too much, using my hands too much. I was coming home in so much pain, but I soldiered through and didn’t let it affect my job. Obviously, my superiors at work knew about my RA, but I didn’t tell anyone else for about a month. I didn’t want to be treated differently. I didn’t want to be told to do less, advised not to do certain things, and ultimately not give the patients the best treatment that I could.
In the last 2 weeks, my joints have been giving me unbearable pain at work and it was visibly affecting me. So, I told some of my colleagues and told my boss and she suggested coming off the ward an hour earlier at the end of the day to give my body a rest each day. Accepting that it is just me that must do this and everyone else can easily do a full day’s work, was not easy. I had to ring my GP and discuss pain relief options as paracetamol wasn’t even touching the sides and I have expressed my feelings before about not wanting to take ibuprofen all the time.
So here I am now on Co-Codamol – having been on it before whilst on a whole mix of potions I was a bit wary, but I have been fine on it, and I think it is working slightly better than the paracetamol. Don’t get me wrong, I can still feel pain but it's bearable to be able to keep working with the pain. My GP also suggested Naproxen as well as if the Co-Codamol doesn’t help, however, when I was first diagnosed, I got put on Naproxen and had a really bad time with it, so I am hoping that we don’t have to go down that route. The GP’s have now just put me on Etoricoxib after getting sent home from work today because of the excruciating pain.
Another tough week at work and not being able to go to rugby to work last Saturday because of my knees made me think again. I’d been denied a systemic steroid injection for the last year or two now because the swelling has never been significant enough when examined. But I thought I would give it a shot. I rang my Rheumy nurse helpline and got a call back whilst at work. Although the steroid injections don’t help in the long run, I was so happy when she
booked me in for one. It was the only thing that had really, really worked in the past 4 years. Also meant I was pushed to get my 4th covid vaccine which I had been waiting for an invitation for the last month. A positive out of all of this, I guess!!
Just over a month after my intramuscular steroid injection, I am now back at square one. It worked for a good 2 weeks and then this last week my right knee has just been getting worse and worse. I know I need to pace myself but it is so frustrating. I have taken it so easy at work this week as we have had the capacity staff-wise for me to do more non-clinical work. But this hasn’t made a difference. I am worse than I was when I was doing more. And I know this doesn’t mean if I now do more I will get better. It's just difficult to accept and even more difficult when you know you can work and survive the pain but you have to think about the future. If I do more now, I won’t be able to do as much in the future and that is what is important. I hate to admit that I am struggling but as a chronic illness advocate I do not want to lie to you all and I shouldn't lie to myself.
Asking for help took so much emotion and courage to do. I’m still feeling guilty for asking for help. I don’t want this to be my life. I don’t want to have to do less than others. I want to be able to give everything I’ve got. But then now I figure that what I’ve got just isn’t as much as everyone else and that that is limited because of my chronic illness. The more I think about it the worse I feel but sharing this with you all is the best way for me to get it off my chest. And I know for a fact if someone were to say this to me, that this is how they felt I would say not to be so hard on yourself. Everyone’s bodies are different and just because your body isn’t up to it doesn’t mean that you’re not doing enough. You’re doing a lot more than a lot of people by just fighting your chronic illness each day. Each day is tough enough without having to do a full-time job, without manual tasks for the full day, without the emotional toll of having a chronic illness on top of the physical. And without the toll of working within the NHS, especially at the moment and throughout the pandemic.
I am going to share Chronically Connected around the hospital and with colleagues as I might not know other people who are feeling the same and as we know from the chronic illness community, facing these things together make it just a bit more bearable.
If you want to send your story in, please feel free. Or if you want to share this story with colleagues or share our platform ‘Chronically Connected’. I am making a poster that would be suitable to put up in different workplaces so I can send you them anytime. Please just ask!
Thank you for reading,