Within the next few weeks, I had my first sessions with both occupational therapists and physiotherapists.
For those who don’t know, occupational therapists work with people of all ages and look at your daily activities at home, school or workplace to see what you find difficult and if there's a better way you can do it. It’s a great help to me because there are certain tasks I find difficult to do, more so on flare up days but also generally. Small stuff to most people, like opening the lids of jars or tins, lifting or carrying shopping bags, picking my babies up etc., but they are big obstacles to me. As well as helping with the tasks I struggle with day to day, these sessions help so much with my mental health and general outlook.
Physiotherapists similarly work with people of all ages with a wide range of health conditions. Physiotherapy aims to improve your physical activity while preventing further injuries. I benefit from this because there are techniques and workouts I can do to keep my joints active and try to reduce pain and damage.
Not being truthful about those injectionsWhenever I attended either session, they always asked how things were, and although I tried to be as honest as I could, really I wasn’t being honest with either them or myself. For a start, I didn’t tell them I had stopped taking my injections, not because I didn’t want to but because I was scared. After the painful episode I described last time, I got so upset and frustrated with myself I just couldn’t do it again.
I really did try, and I thought I could do it. I psyched myself up and sat with the injection. I told myself it wasn’t about me, it was for my babies. I needed to do this for my boys so that I could be the best I could be for them. But fear took over and I couldn’t do it, even for them. That sounds awful doesn't it? It’s not easy to admit, but I promised myself to be honest and open with my story. After that failed attempt I didn’t try again, purely because I didn’t want to waste the medication that so many people are taking every single day to help them through similar conditions.
More pain and no one else to blameA couple of months passed, and of course my condition worsened. The pains were in the same places but because I wasn’t taking medication they were a lot more heightened and, for me, the more the pain the less the mobility. This can be as simple as pain in my wrists and fingers—they get so stiff that I can’t move them—or I struggle to unscrew things or pick things up. Even cutting up my dinner becomes a big deal.
During this time, whenever I bent down to pick something up my knees felt like they were going to snap. I felt like my body was made from glass and could shatter at any time. My feet seemed so bruised; it was difficult to walk. I knew this was an issue, I knew this was my fault, but I just let it happen because I was scared that, should I attempt the injection again, I would do it wrong. I couldn’t tell anybody about it because in my mind they would be angry at me. I didn’t think anybody would understand my fears or the way I was feeling. How could they, they weren't living in my shoes.
Crying in the bathI always told myself 'OK, tomorrow is the day I'm going to start again'. But tomorrow always came and I could never do it. Weeks went by and the same people helped me get through, the same people looked after my children while I tried to rest, and I will forever be grateful to them. Mike did so much, he did everything he could for me, including running my bath and undressing me and helping me in and out and dressing me again. I couldn’t even lift my own body weight because my arms would just give way. I felt like a dead weight to myself. I never, ever thought my life would come to this, never in a million years did I think I would be relying on my partner to help me do simple day-to-day things. In the bath I would just cry, and I think Mike knew this because once I was out, he would always be extra cautious and so loving, he always without fail did and still does reassure me that I WILL BE OK, no matter what we are faced with. He always reminds me that we are in this together.
Having somebody so supportive by my side means so much, more than you can imagine, but I couldn’t even be honest with Mike about how I really felt regarding the medication and my fear of injecting it. He just thought I was taking it as normal and it just wasn’t enough to help me. I did speak to my rheumatologist during these times and he prescribed prednisolone again because I was struggling so much.
Helping me get throughPrednisolone is a type of medicine known as a corticosteroid or steroid (not the same as anabolic steroids). It’s used to treat a wide range of health problems including allergies, blood disorders, skin diseases, infections, certain cancers and to prevent organ rejection after a transplant. In my case it makes me feel human again; so bizarre that one medication can make so much difference, although it is absolutely NOT a long-term option. It’s a backup to help me get through the harder times, but in all honesty it can do more harm than good if taken for too long. I relied on it so much, but it did occur to me that I couldn’t rely on it forever. Sooner or later it would be taken away and then what? It was one more fear to add to my long list of existing ones.
There was so much going on in my mind I felt I was going crazy. One part of me desperately wanted to start feeling better and take all of my medication but there was another part of me saying 'No, don’t do that'. I still feel there are two sides of me, no, make that three sides of me, one saying 'Yes do it' and another saying 'Absolutely not'. Then sometimes there’s a middle me between the other two. Confusing I know, but it makes sense to me! The middle me says 'Right ignore them, focus and let's do this'. But unfortunately, it's only rarely that middle me wins.
Reaching out for supportMonths later I was still telling myself that tomorrow was the day, and still failing. But I reached a breaking point where I had no choice but to talk about it or at least write it all down. I picked up my phone and went on to my notes and I started to write. I went on and on and on until I felt like everything was off my chest and then I sent it to my family. The response was overwhelming. They didn’t understand (and I mean they really didn’t understand) but the effort they put into listening to me and talking to me to make me feel better was just something you don’t come across too often. I am SO lucky to have the family that I have, the help and support I get is just amazing. They all keep me going and each one makes me feel like I will get through this, can get through anything that is thrown at me. I won't mention names, but I know, and they know, who they are.
Once I had sent that message I felt a huge weight lifted off my shoulders. But if I was being honest with myself, that was just the start. I had a long way to go, and first I needed to tell Mike how I was really feeling. However, Mike at that time was a bit in denial about everything that was happening. He was trying to get on as normal, but things weren't ever going to be normal again...I think part of him hated seeing me in so much pain that he got frustrated he couldn’t do anything to help me or ease it for me. I can imagine it was difficult for all the people around me because they heard me complain and saw me in pain every day while all they could offer was support. Of course, I did tell him, I had to tell him and as ever he was so understanding. He reassured me that I was going to be absolutely fine, but of course he also gave me a telling off as well…one, for not telling him sooner and two, for not taking my meds how I should have been!
My family encouraged me every single day to talk my health care team but that was another hurdle I felt sick at the thought of crossing. I gave myself a little time, I cried every day I was so down. I didn’t care that I was in so much pain anymore I just wanted to give up, wanted it to go away. Then I realised that this was never going away, and the sooner I did something about it the better. So, I picked myself up and I started again, for no other reason than my family; they needed me, and I really needed them.