It has been several months since I have written a post. I want to write more, but this horrible disease has pushed me into a corner. Fatigue has reared its ugly head, causing me to have less energy to do the things I would like to do. Besides this, some medications I have been taking for other problems (allergies and prostate) had a negative impact on my MS. These drugs have hastened my decline. Nowhere on the leaflets does it mention an impact on MS, but it impacted me.
I stopped taking these drugs and am now using diet and avoidance to help with the symptoms of these other illnesses. This situation has reduced my effective hours to where I have about 5-6 hours a week. I can do things. I have had to adapt again. Changing my focus and being more gentle with myself. Learning to say “No” has been important. The focus must be on maintaining my health.
A ‘new’ plan
Over the last few years, I have had this happen, and the gaps between declines are getting smaller all the time. In a phonecall with my doctor at the end of April, we decided I should go to the Acute Medical Assessment Unit (AMAU) in the local hospital. We made an appointment for May 3, which I went to. I arrived at the hospital at 11 am and had to wait in a queue for parking for 30 minutes, before I could get to the AMAU.
When I got there I was told to wait, and so I did, for one and a half hours. They took some blood, did various assessments, and then I had to go to a different place to get a second assessment from a doctor. This meant another wait of two hours. Another assessment, almost identical to the first, and another wait until 4:30 pm when the doctor arrived back and let me know they wanted to do an MRI scan of my brain and spine, with and without contrast. They want to find out if I have any active lesions, as they might put me on a different medicine. I was expecting to have five days of IV steroids to get me back on my feet again.
They could not do the scan that day, so I had to head back home again. Not what I expected or wanted. But what could I do? I waited a week before I got a call about an appointment for the scan. It will be next Tuesday at 12 pm. A three week wait and in this time my fatigue has worsened, mobility declined and the dizzy spells I get when I stand have worsened. I have spent more time on the couch with my legs up, snoozing, as the weeks have passed.
I hope they will suggest a plan which doesn’t involve waiting again.
Advocacy work
Despite this, I have been able to do some advocacy work. The main one was the publication of an article on the RTE Brainstorm website about the effect of being an advocate on my mental health. You can read the article here (https://www.rte.ie/brainstorm/2022/0506/1296397-patient-researchers-health/). I also attended, as a panelist, a conference hosted by the National Clinical Trial Office on May 12. At this event, I got to be the voice of the patient and I believe a recording will be available soon. I will share it on social media when it is.
I also did a short video for the International Clinical Trials Day for the university I work for on Twitter. You can see the video here. Https://twitter.com/crfghrb/status/1527582404709232641?s=21&t=keBEC8gCA3XkxxNdeMVk2A. On May 26, I will speak to Marie Ennis-O’Connor from Merakoi about MS for world MS Day. The theme of the talk will be “Connections”. They will broadcast it live and you can learn more here https://www.linkedin.com/video/event/urn:li:ugcPost:6930140105944776704/
The Future is changing
The work I am doing at the university will finish soon, June 30, and then I will have to stop working. I don’t have the capacity anymore. I will do a little advocacy every once in a while, but I cannot work in a job anymore. This part of my life will finish and I will have to adapt again. Fortunately, I have something which I can do, when I am capable, which will be positive. I just need to rest, recover, and plan another version of my life.
I have had to do this several times in my life and this makes it easier to process. It can take a huge toll on your mental health, unless you have a plan, which you can make happen. Being active in the transition makes it much easier.
Have you experienced a change like this? What do you do?
