MS is so unpredictable on a daily basis- it can strike any day, any time, whether you have plans or not. We plan to reserve energy to avoid fatigue, how much we eat or drink due to bowel and bladder problems. But MS can strike out of the blue without any warning and cause a lot of frustration, overwhelming anxiety and depression. I once read that MS patients had the highest rates of depression and mental health disorders among all chronic illnesses/disabilities. This hit home. The very nature of MS is that it is different for each patient and has a wide range of symptoms. The brain is such a complex organ and we need it for everything we do, think, say and feel.
At times we grieve our former selves. It’s hard watching friends and family doing things that you can either no longer do and do not have the energy you once had. It’s even harder when you look so good but you feel powerless. Sometimes it feels so unfair… yet we find a way to go on. It’s sometimes the little setbacks too that can impact how we feel.
Yet, I’ve realised how resilient I am and how resilient all MS patients are. Recently I have been doing quite well with my MS but a few weeks ago I had an experience that really shook me. I was with family and out of nowhere my left leg and foot went numb and led me to wobble, relying on one leg to move and ended up on the floor. I felt so embarrassed, and it was a reminder that MS is still very much around and that I cannot control everything. It really scared me and thus my anxiety heightened because my mind went straight to, “I hope that doesn’t happen again in front of strangers.” Thankfully, I am doing well but since my diagnosis I’ve had several unpleasant experiences in public. I’ve wet myself numerous times and I’ve walked funny due to a movement disorder caused by lesions in my cerebellum and felt embarrassed when people stare. These occurrences can knock your self-esteem and affect your mood and add to your depression/anxiety.
Although I have suffered with my mental health for years, the anxiety from living with Multiple Sclerosis has felt overwhelming at times and induced a new level of anxiety within me. I have struggled with my mental health since I was a young girl. Anxiety, Depression, agoraphobia, OCD and PTSD are a few of the diagnoses that I have received over the years. My life hasn’t been the easiest journey but thanks to years of counselling, CBT and a high dose of Sertraline, I have learned healthy coping tools that have helped me through my darkest times.
When you live with a chronic illness you learn ways to manage the load. It’s not just our physical bodies that suffer but our mental health too. Sometimes it’s overwhelming and you feel like you’ve two options- you can sink or swim. MSers metaphorically swim everyday, even if we swim sideways. Our symptoms may not always be visible but we battle every day. Chronic pain is my main complaint in particular occipital neuralgia and trigeminal neuralgia. It’s very lonely being in pain and can be so depressing. Thankfully my ON and TG are under control at the minute but last year I had both at the same time and I couldn’t take the pain anymore, I lay on the ground and begged God to take me out of my pain and let me die. I was brought into hospital for nerve blocker injections and after months of pain I was no longer suffering to the extent that I was.
MS is not all doom and gloom. It is not a death sentence, we can still live a long and happy life. But just because it isn’t a death sentence, does not mean that it is not hard and difficult to manage. We face difficulties daily that healthy people do not have to worry about. We have to think about wheelchair accessibility, toilet facilities, energy reserve and how we are going to feel and be. That is a lot for anyone to think about and it can take its toll on us every now and then. It is okay for anyone to feel down and sad. It’s okay to rant and rave and cry. It is okay to have a bad day. We won’t always have bad days. There are some great days now, and ahead. You are not alone. I applaud every single person out there living with a chronic illness who facing & dealing with their own battles on a daily basis. You can do this.
Check out our MS and Wellness - Mental Health page here.