The new ‘normal’
I cannot walk any more!!
I am in constant pain!!
These are some of the new realities for people with a chronic illness, the new ’normal’. You no longer have the luxury of being able to hop out of bed and go for a long walk. Everything in your life has to be planned around your illness. This new ‘normal’ takes time to adjust to.
Tough decisions
In the last week I have had to avoid doing things which, when I was well, I would have loved to do. One of these is a class reunion. It is now 30 years since I left school, and this weekend a reunion was planned. As part of the reunion there were several events taking place, dinners, golf, and late nights reminiscing about our times at school, and what has happened in our lives since then. 30 years is a lot to catch up on. I decided not to attend, as physically it would have been too draining, and the recovery time could be weeks. This is my new ‘normal’.
Life Changes
Life, whether you are well, or not, brings many changes. In my life I have had so many that I have lost count. One thing that I have learned is that I cannot live my life in the past. It is part of me. That is true. But it is not me now. I am living in a totally different situation and I have to live to the very best of my ability given my current situation. So I have accepted that there are things that I cannot do, such as attending the school reunion. However are are thing that I can do. Such as writing this blog about my experiences and what I have learned. This has given me peace in my life, and happiness.
I still struggle with this way of living, and I admit that I don’t always succeed. But I will always try to enjoy what I can do. To focus on my abilities. The other path could lead to despair (see Tip 3 – Look after your mental health). I have RRMS (Relapsing Remitting Multiple Sclerosis), and it has gone through cycles of having an impact on my life, and times where it has not. I also have a chronic headache (which has lasted for 3+ years at the time of writing) with no seeming possibility of improving. This will not change.
Choice
So I have a choice, accept what I cannot change, and move on with my life, or rebel against it, and live a life of struggle. I have chosen the former. This is an active decision, and a decision that I have to make every day.
Uncertain future
At some stage things might become too much for me, and I could be tempted to wallow in self pity. I sincerely hope that this will not happen, and I am depending on the people that I surround myself with to help me. The new ‘normal’ can be very tough.
Question?
How do you cope with the loss of an ability? what do you do to live your life better? Please let me know in the comments below.
See my other posts in this series.
Disclaimer
As I am not a medical doctor, or other member of the medical profession, I cannot give medical advice. In this post I am letting you know what works for me. Only change what you do to help you cope with your illness after discussing it with a qualified medical practicioner.
I have progressive MS…..I think it’s secondary, but my consultant isn’t sure. It’s only a name, so I just get on with furniture walking on a good(?) day, and use my wheelchair on the bad ones. My memory is rubbish, and I have severe brain fog, constantly unable to recall what I had planned to do next. I find a sense of humour is vital, but when that has a day off, I’m really not good company! 5 years ago I could walk 20 miles up and down hills, keep my house clean and tidy, and was known for my organisational skills. Life can be very cruel sometimes, but thank Heaven for a wonderful family, amazing friends, and a supportive church family.
Thank you for sharing Elizabeth. We all have bad days, that is unavoidable I think. But with your sense of humour it will help. I always try to focus on what I can do, and on the good things I have in my life.
Funny that. Me and my son Philip take the ‘establish the new normal until it changes approach too. Philip (20) had first lesion (C3) March 16 and has had subsequent ones at craniocerbical junction, T2, left optic nerve which has left him permanently blind in L eye and then R optic nerve which resulted in total blindness for a few days but which has resolved to a great extent, thankfully allowing him to coordinate live video feeds at our church’s ladies conference last weekend, which 3 weeks before would not have been possible!. So this first year and a bit has been pretty full on. They are saying RRMS (spinal) currently but query NMO. Thankfully he’s very stoic in his young age. But thanks for writing. Will be good to keep up with how it is for you.
Thank you for sharing your experience, and the experience of your son. I was diagnosed when I was 23, and I am now 48. For the last few months I have had to use a stick to walk, and I am walking very slow. Because of a car accident 3 years ago I have had a constant headache that varies in intensity from a 5/10 to 8/10. It really makes it difficult to concentrate. That is why I do everything in 30 minute chunks. It helps with managing the pain.
I wish your son every success, and as long as he focuses on the positive it will make it much easier to live with his MS. I know it is difficult, but he must try not to let MS be in control. It is so easy to write that, but to live it is hard. It is worth the fight, in my experience.
Hi Robert, it is so hard when you lose an ability. I have secondary progressive MS now and my life has changed so much in the six years since progression started. I definitely have down days, but I try and cope with them by things like yoga and meditation. Giving myself a bit of me time helps, and like you said, focusing on the things that I can do and the people that I have around me who support me. I’ve also tried to increase the time I spent doing enjoyable activities, such as reading, as I can do this easily. Hope that helps you to know that you’re not alone in feeling frustrated about this x
Thank you very much for your comments Jenny. This whole idea of blogging about what we do to live with our illnesses has been a huge eye opener for me. I feel part of a community of people who are fighting every day to overcome the obstacles that have been put in front of us. I admire you, and other bloggers for having the courage to share your experience and what you have learned. It is giving me strength to know that others have travelled this road before me, and are winning.