I must say, I’m feeling quite nervous writing this blog, but I think its very honest and I am sure that I am definitely not alone in how I am feeling. In the first blog I wrote last year, MS was extremely new to me and I wrote about grief and how I went through a grieving process upon receiving my diagnosis. Now here I am a year and a half later and feel like I am revisiting one of those stages. When I was first diagnosed I experienced relief, anger, sadness, bargaining, guilt and denial. Although I have accepted my MS diagnosis and I’m a very positive person who always tries to look at the positives, I feel in the past few weeks I’ve been re-visiting my old nemesis; Anger and loss.
On the outside I look completely fine but sometimes I wish people could see inside my body to know how I really am; that my brain and spinal cord are not fine. It was pride weekend in Dublin and myself and my partner went to the parade and to the bloc party afterwards. I have been struggling with fatigue – probably due to the heat; and my legs were just not able for much at all. Don’t get me wrong, I love the sunshine and the summer, but the heat has been tough. We were walking in the parade, enjoying the atmosphere; the crowds cheering, the music, the general vibe was amazing; but I felt frustrated that every few steps I was taking, I would have to stop for a rest. I felt like my legs were going from underneath me. When my fatigue is bad, My legs and arms feel like they have sand bags or weights attached to them, pulling at me and weighing me down. Only two years ago, I would be walking, running, singing, dancing and the life and soul of the party. But this time at Pride I felt like I was an 80 year old struggling to get past a few metres, needing to sit and rest my legs. To be honest I felt like I was ruining the fun for my partner and felt like I was needy, I felt like I was a burden. In such a short space of time I’ve watched my body change in little ways and it’s scary and upsetting.
I was feeling a bit depressed because the old me would be up dancing, loving the atmosphere, singing along and cheering with the crowds. I was always someone who would say “I never get embarrassed” but lately I’ve really struggled to string sentences together, to say how I’m really feeling. Sometimes my words come out jumbled up and it can be embarrassing and frustrating when you know what you want to say but just can’t.
I count myself lucky because I am still able to do a lot of things for myself but when you notice your body changing, it is very difficult. I feel guilty because I know my partner does a lot for me and helps me whenever I need it, but sometimes I just wish that I didn’t need that help. When you’re a 28 year old and your partner has to help you walk a few metres and has to sit with you every few minutes, its very frustrating. I like to look at things on the brighter side of life and I know that I will have good days and bad days. The past few weeks might have just been a few bad weeks but it is still tough.
I’ve been stubborn before and pushed myself past my limits and not in a good way. If I wasn’t able for walking, I’d push myself to the point that my legs would go from beneath me, just because I was too proud to take help.
Now I might not like to admit it and I never thought I was stubborn but it turns out I am a little bit – but I think everyone is to a certain extent. I think I’ve learned it’s okay to ask for help or to take the help that you are offered. It’s okay to not be happy all the time, it’s okay to cry if your upset over changes that you notice. We are all human and living with a life-long illness will have its ups and downs. I myself feel like I’ve been angry and frustrated over these things for the past while but I know that my good days will come back and I look forward to them. MS isn’t all doom and gloom for me and for me it has changed my life in good ways too. I just felt that if anyone newly diagnosed is reading this, it is okay to feel this way too. There are good and bad days and I think this has just been a bad few weeks. But I am ready now for my good days 😊