(Photo Description: Codee sitting up in a hospial bed, wearing a clear face shield. Smiling with her thumb up.)
The beginning of March 2020 just before our first lockdown went into effect, I attended my first physical therapy session at the rehab center. A deep tissue massage took place. The therapist was confident that after a few massage sessions, I would be able to start an exercise plan to build up muscle strength, eventually leading to less pain.
From here most of you know a lot of the story. I became sick with Corona. After 8 weeks in bed and a couple weeks to get back on my feet, I went back to rehab for my second session. I had been assigned another therapist who didn’t do soft tissue massage. We started with an assessment and made an exercise plan. The exercises were so intense, that I would need help getting out of bed the morning after every session as I was in so much pain I could barely move.
After an assessment from the rehabilitation doctor and the physical therapist together, we had come to the conclusion that my muscles couldn’t be recovered. I would have to learn to maintain the strength I still had and pain would be a permenant part of my life. There was nothing more they could do for me.
The pain in my lower back, right hip and right leg slowly increased and I became more limited in what I could do. There were many days when I just didn’t know which position to put my leg in while sitting or laying. My pain meds were increased and that lead to other problems. A pain med-brain fog that prevented me being able to think clearly and do some things safely and independently. I was at my witt’s end and sought help from my GP.
I asked to go to pain clinic. The GP was honest in telling me he wasn’t sure if they could help, but organised the referral any way.
After having many medical professionals tell me ‘we don’t know’ or ‘I can’t help’, I even started to think I was crazy. Maybe the pain really isn’t as bad as I feel it is? I should probably just stop complaining and live with it.
It was a relief to visit pain clinic for the first time and meet a doctor that heard me, believed me and wanted to help me. During examination he found all the painful spots without me really having to point them out, and decided we could try a treatment to see if it helps.
An Epidural Corticosteriod injection would be the treatment and would take place in about 10 days.
This injection contains a numbing agent and a painkilling steroid, which would need to be injected between the bones in my spine. Requiring a visit to an operating theater so the doc could use live X-rays to determine the placement of the needle. So I would get a bed and a stay in hospital for a few hours.
In my adult life, I’ve never been admitted to hospital. Certainly not a hospital here in the Netherlands. The idea of this needing to happen and Jessica not being able to be with me, scared me. The procedure also worried me as I had no idea how painful it would be as I would be awake throughout the whole thing. I spent ten days in a rollercoaster of emotions.
When the day came and the nurse came to get me from the waiting room, it all ended up not being as bad as I had imagined. The nurse was kind and took care of all my needs. The bed was comfortable, the doctor doing the injection was very good at helping me relax and although the procedure was painful, it wasn’t intolerable.
Within 5 minutes the procedure was over and I was brought back to my bed to rest. 45 minutes later, the nurse asked me if I had any numbness. At that point, I only had cramp in my foot. So she helped me dress and Jessica picked me up to bring me home.
In the car I felt my foot change from a tingling cramp to a numb feeling. That feeling started to rise up into my leg and by the time we were home, I couldn’t feel it or move it. Logical – I had just been injected with a numbing agent. Before we left, the nurse informed us that any cramp or numbness would last 8 hours. I was dragging my leg behind me for about 13 hours before I could finally feel it and use it normally again.
Although I needed a lot of help, which was a little frustrating as even going to the toilet was challenging, it wasn’t the worst thing about the whole treatment. Just before being admitted, the nurse informed me that the corticosteriod could affect my blood sugar levels so I should keep an eye on them.
The day after treatment, my levels had gone through the roof. I felt ill and after talking to both the emergency doctor and my own diabetes nurse, I was given medication. Tabled number 12 in a day. Though the medication is finally helping, I went through some ups and downs to get there. Feeling really tired and under the weather, following the wrong diet in an attempt to lower my sugars, which made me sicker and finally going back to my normal diet which pretty much immediately made me feel better. I was frustrated, cranky and feeling low. Thankfully I have a wonderful support network of people. including Jessica, my nurses and many Twitter friends who helped me through it.
Did the injection help? Yes, it did. Until now I’ve noticed that I have less pain. In fact, there have been a few days with no pain and the mobility in my leg is better than it was. The injection is not a permenant cure. How long it continues to help varies from person to person. Some get 6 months relief, some a year and some just 3 months. So it will probably have to be repeated in the future, which I have no issues with as long as we can keep my blood sugar stable. In August my doc will call to see how it’s going with the pain and then I hope he will look at treating the pain in my shoulders, as that is now alos starting to limit the things I can do with my arms and hands.
Chronic pain is for me the most challenging part of having CRS. Simply because it’s the invisible part and I have a hard time explaining to others how that pain affects me and makes me feel every day. I find myself more and more saying no to things such as FaceTime, or going outside for a walk because managing the pain costs me the most energy. I’ve noticed this frustrates people. I am sure it’s difficult to understand something you can’t see.
Thankfully I now have a doctor who can offer help and support when needed. I feel validated and that’s a fantastic addition to my support network.
CRS Life 