Living · Mind · MS Life · Spoonie Parenting

Five things…….

When I told Hubs that I was going to write a blog post about the 5 things that multiple sclerosis has given me, he was incredulous.  ‘What has  it given you?  It should be the 5 things it has taken away’.

I could write a novel about the things multiple sclerosis has taken away from me – and maybe one day I will!  Life is bloody difficult  much harder now, but maybe reflecting on a few of the good things that come out of having a chronic illness like MS will help me and others to feel a bit more positive.  So, here goes….

I appreciate the little things

Sounds cheesy, but there is nothing like a diagnosis of MS and the symptoms that go along with it to make you appreciate when things are good.  Peonies.  Sitting in the sunshine with Hubs in Amsterdam, celebrating our 10th wedding anniversary.  Playing board games with the kids.  Belly laughs at the kitchen table.  The time I was able to randomly walk crutch free for the 10 minute journey home from my parents’ house.  Getting home made cards from the kids declaring that I am ‘the best Mum ever’ (especially when I don’t feel like I am).  Spending time with my parents, sharing a glass of wine with them.  These are the little things that cheer me up when I feel rubbish.

Sunshiney Amsterdam
Date night with Hubs

Relationships

Nothing has tested my relationships more than my MS.  it is hard to rely on others when you are so used to being independent.  My relationships with friends, my parents, my siblings, my children and my husband have all changed somewhat –  I rely on others more, and can do less, meaning that my husband does most of the ‘physical stuff’, whilst I organise and plan.  My kids don’t know the ‘old me’ (well, Alex might have little snippets of memory, but not much), only the Mum who needs a lot of help – and they give it to me in spades.  My husband and other family members do remember the ‘old Jen’ – and they treat me exactly the same, which I appreciate, but I know it is hard for them, seeing how the illness has affected me.  I still feel as close to my sister as ever, despite her living over 10,000 miles away in Sydney.  We write, Facetime and Facebook each other more often than we would have done if she were still in Glasgow.  My parents live near me and help out if I need them to and my friends treat me no differently to when I was more mobile and less fatigued, despite me sometimes having to cancel plans or say ‘no’ to invites.  Ultimately, MS has made me be even more thankful and appreciative of my friends and family.  Life is short, you never know what is around the corner; having people you can trust and who love you is worth its weight in gold.

A ‘healthier’ body?

Ok, so this is a bit of an oxymoron.  My mobility may be crap, I may get tired just by having a shower and my toes and legs may randomly cramp and spasm but….  I also follow Overcoming Multiple Sclerosis (OMS) which emphasises a plant-based diet, regular exercise and meditation.  Ok, so I can’t say that I am 100% compliant, especially with the meditation and exercise side (difficult if your legs feel like lead and you just feel like sleeping) but I do follow a plant-based diet (no meat, dairy, eggs) 99% of the time and try and meditate when the house is quiet.  I was always a bit sceptical about meditation but,  since doing it, I can definitely say that it helps to ‘quieten the mind’ and generally make me a more chilled out person, as does regular-ish yoga practise.  Following the OMS diet has reduced my fatigue levels and, research shows, reduces my risk of developing heart disease, diabetes and other chronic diseases.  If you had told me 5 years ago that I would actually enjoy eating mainly plant-based, I would have laughed.  But is amazing how quickly your tastes change.  That doesn’t mean that I don’t crave baked camembert and a bottle glass of red wine, I just try and keep the cheese to a one off around Christmas time.

Fruity


Mentally stronger

Lack of energy leads to me being able to do less and having to be selective about what I do do.  Sometimes it is difficult to say no, but, since being poorly, I have made myself do it because I know that I am only doing myself a disservice if I don’t.  It may frustrate and annoy people but, to be honest, I feel better for being upfront and I am proud of myself for standing my ground.  Those close to me know that I will always try to do something if I can but if I have to say ‘no’ or cancel it is because I need to, for my own sake.  I guess I could say that having to say ‘no’ has made me mentally stronger, as has constantly seeing other people living the life I want (I am so jealous of my friends who can enjoy clubbersize, or dance all night if they want to).  Constantly being reminded that the life plan I had in my mind has now gone out the window has made me realise the importance of having a new goal or dream.  What that is, I don’t know yet, but I am determined to find it.

Understanding

I like to think that I have always been a tolerant person, feeling compassion and a level of understanding for those that go through hardships.  I help people in my NHS job and come across people from all walks of life, often very, very different from my own.  But, in actual fact, when I was able bodied and didn’t have symptoms of MS, I truly didn’t know the impact that disability can have.  I would wonder if a person was truly disabled if they were able to walk into a shop after parking in a disabled space.  I didn’t consider that not everyone in a wheelchair can take part in wheelchair sports, due to issues related to pain and/or fatigue.  I thought that ‘a good rest’ would help if a chronically ill person said that they were tired.

I now know that I was ignorant.  No-one really knows how it is to be disabled unless they are themselves – that isn’t a complaint, just an observation.  And that is why things like forums and chatboards are a lifeline – I have connected with people like me, people who understand.  And that is what I also hope this blog does – act as a support for people who need it.

Yep, having a chronic illness sucks, but taking the time out to appreciate the good things makes it marginally better. What kinds of things help you when you are feeling down?


 

 

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15 thoughts on “Five things…….

  1. You are amazing Jen! I like that you have focused on the more positive side of MS and it sounds like you have learned a lot from your experiences of it. When I am feeling down, I listen to my hypnosis tapes from my friend, Leila. It quietens my mind, in a similar way to how you describe your meditation.

    Liked by 2 people

  2. Hi Jen, thank you so much for your amazing blog posts. We met once when we were kids. Your cousin Karen is one of my best friends- I grew up just round the corner from her in Pinnaclehill Park. My dad still lives there (widowed just like Margaret) and Karen and I are in touch v regularly. She put me on to your blog. I have muscular dystrophy – and a 4 year old. I just soooooooo relate so much to almost everything you right about. Reading your posts today has given me a sense of not being alone. Thank you 🙂 Louise X

    Liked by 1 person

    1. Hi Louise, it is so lovely to hear from you 🙂 I remember meeting some of Karen’s friends when we were visiting -feels like a lifetime ago! I am so pleased to hear that you find the blog helpful, to be honest I started it as I didn’t have anyone to talk to and it helps to get all my random thoughts out! Wishing you all the best xxx

      Liked by 1 person

  3. You are incredible!!
    My Dad is an MS warrior too and has been wheelchair bound since I can remember, people often think about the things i missed out on with my dads disability, the things he couldn’t do for us but I feel SO lucky that the things he has done for me, the things I have learned from him are much more important in life. because of him I have an adundance of gratitude, empathy and have mastered how to make the most delicious lemonade when life throws a pile of mouldy old lemons. My Dads illness has made me (and my sisters) a better person.

    Liked by 2 people

    1. Thank you so much for your comment! It makes me feel so happy to hear from those that have parents with MS. It is very easy for me to feel guilty that my kids are missing out because of my disability but hearing how you feel your Dad’s illness helped you makes me feel so much better. Thank you so much xx

      Liked by 2 people

  4. Wow. This really got me thinking. I have bipolar and related very much to what you said. I love to write, journaling when depressed if I can, focussing on the love in my life – esp that of my daughter and mum. I’m now considering my positives from my disability. Thank you.

    Liked by 1 person

    1. I am so glad it has helped. I have to admit that I most definitely don’t feel this positive all of the time. But when I feel myself getting down, I do try and remind myself of the good things I still have. My kids are my number one thing to be positive about!

      Liked by 1 person

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