I wasn't planning on writing a blog post today but felt compelled to because last night my amazing husband took part in a mental health podathon and I've literally just listened to it and wanted to share it with my followers because some of you will have husbands/wives/partners who live with someone who has MS.
We have spoken about his feelings before but to hear him discussing it like this has been eye opening. As someone with MS my day to day life is all about my exercise, my diet, my ability to do things and being fiercely independent I try really hard not to rely on my husband to do stuff for me but I do. Sometimes I think I am just being plain lazy because let's face it when we are warm and snug on the sofa, the thought of having to get up and the effort that entails puts me off and the fact I know it will take him seconds to walk into the kitchen and grab something is such an easy option but now having listened to him talking I am going to try harder to not do that because it's unfair, I have legs (and some people don't), so I should just get on with it. My husband talks about my positive attitude, and my friends rave about it all the time - and I am definitely that way inclined - to me, spending time being negative about my disease won't get me anywhere and I hope my positivity encourages others to face life in the same way. Stuart talks a lot about guilt and it's interesting to hear it from his perspective as I feel guilty at times too. He feels guilty for feeling cross because he knows the challenge is harder for me, I feel guilty because we got married and my walking deteriorated so quickly that I feel bad because that impacted how we lived our lives. I feel guilty because I have to get him to do things because they aren't easy for me to - for example, popping to the shop because we need something, that's a bigger task for me and one that takes so much longer to carry out. Unlike Stuart, I don't think about these feelings for long, because whenever I feel bad I always tell myself that there are many more things in the world that are worse and to me my biggest feeling of guilt comes from feeling sorry for myself because of that.
My parents (and they may well read this), do not have a high level of emotional intelligence. I am not telling you this to criticise them but it's a fact that has made me the person I am today and has given me strong level of resilience which is probably my biggest asset in dealing with my long term illness. My childhood was always filled with "just get on with it", there were no discussions about feelings/emotions, I just dealt with things internally - no one took the time to understand why I might have come home from school upset because it manifested itself to just being grumpy from their perspective. Psychology and analysis in my generation just wasn't the done thing and looking back it was definitely not part of my upbringing. Perhaps that's why I did a Psychology degree because I craved the understanding of the mind and why we behaviour the way we do. I can look back now and see that these missing elements made me become a very strong independent person who is able to put my feelings to one side and just get on with life. I used to be angry with my parents about this but I have learnt over the years that it wasn't their fault they only know what they were taught and although both my parents were raised differently they have many similarities, the biggest being that neither of them were raised in emotionally lead households - it was more a case of kids should be seen and not heard, you have to work hard and get on with it. As a parent myself, I have always made myself available to my son so that he can talk to me about his feelings and I am so glad he does open up to me to some degree - I don't think any teenager tells us all, but I do know when he has an issue he has no problem in talking to me about it and he knows I am always there for him.
I have gone off on a tangent so will circle back to my husband, it's been fascinating to hear him talk and has definitely reminded me that I need to be more aware of him and how my illness impacts him. We have a great relationship but it's easy to forget (especially at the moment when we are trapped at home) that my MS impacts him too. Hence why I wanted to share his podcast so that others can listen and perhaps it will make them aware of the impact our MS has on their loved ones. I always believe things in life happen for a reason and perhaps my MS went downhill after marrying Stu because the world knew he would be my rock and he absolutely is, he is my best friend and I wouldn't be able to navigate this path without him. He does so much to ensure I have a life whereby I don't have to live with stress, I can do all my exercise and not have to worry about working constantly and that I have the money to do things to help my health - osteopath appointments, massages, lunches with friends, holidays, eating out - all the things that help keep me moving and keep me happy. I appreciate every day how lucky I am, not with the MS as to be perfectly frank that can do one, but that I have the mindset and ability to make the best of my situation.
Going back to Stuart's podcast I loved his idea of the anonymous Twitter account - it's a great idea - a bit like when I sometimes write a Facebook post but then delete it - I've got my words out but didn't share it. It's good to get things off your chest and his idea is a great way for doing it. I never knew he had this other Twitter account and that's cool with me, I don't need to know about it or see it, all that matters to me is that if it helps him then it's a great outlet. I am glad he has his ways of coping with the struggles of being my 'carer' and hearing him talk reminds me to remember the impact on him too as it's easy to forget when dealing with the challenges of life with MS. I'm also amazed that he has struggled to find groups for people who live with someone with MS - so if you know of any please share so we can help others find them.
I haven't really discussed here the depths of his podcast as I think you should listen to it if you want to hear more. Here's the link
Thanks for listening and thank you to my amazing husband who I am grateful for everyday as I know there are plenty of people out there who don't have someone besides them on their journey.
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