Acclimatising: What My MS has Taught Me

-
Over the years, I have learned a lot about my MS and, in the process, about myself. I have learned that I can deal with challenges and, sometimes, adversity, and I have learned that I am actually a very resilient person. This turn of phrase makes me sound surprised but, you see, I'd never really thought about it until recently when I dealt health issues in parallel.

I thought I'd share what I have learned in the hope that it helps someone.

Tenacity and Curiosity (with a capital 'C') 

 These days, I find it hard to give up. I think this is partly because I am older and feel like I can no longer fritter away time. I also think it's because I have a renewed curiosity (frankly, I'm a bit nosey!), which suits my career as a Coach. However, I also know when to let go, when the input of energy required outweighs my need for an outcome. Externally, this looks like I'm giving up, but I'm making a conscious decision to put my precious energy elsewhere (see earlier post about 'spoons').

I have people in my life who care

 For a long time, I was angry. I didn't know quite what or who I was angry at but then this turned into something useful. A diagnosis of a chronic condition can weed out friendships that are one-sided and allow you to develop a smaller circle of people to invest in. They, in turn, become your support network. My family are very helpful to me, even if they don't really understand the whole MS thing. The important thing is that I have people around me who offer valuable support and I love them. Surround yourself with loyal supporters.

I listen to myself now

 My younger self would have pushed herself to the extreme in almost every aspect of life. I put myself to the side and cared much more about others. The balance was tipped constantly toward making others happy. This included going to work very sick and ending with an adult tonsillectomy and a brief, but nasty skirmish with pneumonia, a couple of months apart. My fatigue was so extreme, I walked around like a zombie for months, sleeping almost entire weekends due to exhaustion, my Vitamin D levels dangerously low. With my immune system bolstered gradually, I took greater control by listening to my body. When I felt fatigue come on, I would rest. When I had spasticity or numbness, I'd take the lift or not walk very far. I went part-time. You get the drift. I began to put myself first, and things unsurprisingly improved. Start with small changes and put yourself first.

It's the small things that really count

When I was younger, all I wanted was a huge circle of people around me, ridiculous amounts of fun, usually involving lots of nights out and big trips to foreign climes with friends. Today, this doesn't appeal, perhaps because I'm in another phase of life, but also because I've acclimatised to my MS and really appreciate the small things now. I love that we have a car now, giving us more freedom as a family. When we go somewhere, the impetus is that of unadulterated joy and laughter. I have a new love of writing (or a rediscovered one) - what are the small things that matter to you?







Popular posts from this blog

Blogs, Vlogs & Lots of Dialogue: Where Have I Been?

-
Image
                                                         Copyright: C King It's been over a year since my last post and, if you're missing this blog, you're probably wondering where I have been. To say that I have been been resting on my laurels would be an overstatement, given that I'm not very good at pacing. After months of home-schooling finally ended, I threw myself into supporting others, including advocating for them.  I have been particularly busy in my advocacy work - guest blogging, filming, reporting, mentoring, public speaking. This year, I've also been a member of the All Party Parliamentary Group (APPG) for MS, which has been extremely interesting, and supporting others in navigating a health system which, whilst amazing, can be sometimes monolithic and uncommunicative at a time when some are going through the most difficult ...
Read more

Disclosing Your Condition to an Employer

-
I've worked with MS since 2008 and when I was diagnosed, I had already been working with an organisation for a year and a half. In this circumstance, in the haze of diagnosis, I felt obliged to call my line manager directly after telling my parents. I didn't have to, I probably shouldn't have. It would have made sense to let the news sink in, but I needed time off and I didn't just want to call in sick. This is tip no 1. Don't feel obliged to tell anyone until you're absolutely ready. This may be hours, weeks, months or even years. Unless you're legally required to, you don't need to disclose. My role was made redundant six months later and I was pregnant six months after that. I decided to take some contract work, knowing that I wanted to take a year for my version of maternity leave. I was quite far into the selection process, for a role I could have performed beautifully whilst asleep, and at the last hurdle they asked me if I had any holidays boo...
Read more

Reasonable Adjustments at Work - Why, What & How?

-
Image
The Equality Act 2010 (UK) says that in order for your health condition to be covered, it must have a long-term and substantial effect on your daily life, which is why those of us with MS are included (even if the impacts aren't obvious to others), as MS is classed as a progressive condition. The Act covers us from the point of contact with an employer to when we're in the workplace. Once you've told someone about your chronic condition, the natural follow-up question would be to look at your needs. Before any conversation around your needs takes place, I really recommend taking time to reflect and to research. Read one of my very first posts about disclosure as background. If you don't know where to start, perhaps these questions might help? Which areas of the role might you struggle with? (be as specific as you can)* What reasonable adjustments do you need? If you've had reasonable adjustments previously in another role or environment, how did they...
Read more