what nobody tells you is the absurd situations you find yourself in…and I’m not simply talking about the MRI scanner or “spitfire” as my dear old Dad called it after his little jolly in one. Most endearing is the way my dear old Dad keeps calling ‘it’ M & S. Like the shop. He’s not even joking he just gets things a bit mixed up sometimes.. (insert your own M & S gag here. My favourite is “it’s not just any neurological condition, it’s a M & S neurological condition..”)
More recently as I left a post-diagnosis counselling session I thanked the counsellor so enthusiastically for her time. Not only had she been empathic, supportive and let me share unconditionally but she had also let me go verbally ‘crazy’ with a) my story b) my fears and c) any other thing that was vaguely connected to how I was feeling at any one time. I was so grateful for that hour with her. She will probably never know how much so. To be able to share without feeling one should protect another is priceless. However, I think my actions as I left may have undermined (or possibly emphasized??) just how much I *needed* that hour…
As I left, thanking her (bowing slightly?) I told her to please forgive me if I ever called her ‘Claire’ as I knew her name was ‘Sarah ‘. As she assured me her name was definitely Sarah I thanked her again whilst faffing with my cardigan and putting it on not only inside out but upside down (Yes. This is actually possible). It is possibly testament to Sarah/Claire that I did not feel too embarrassed by this. I did feel slightly embarrassed a few weeks later however when seeing my Specialist. I felt embarrassed for him. At one point I obviously looked a bit tearful and it happened to be one of the handful of moments Doc gave me eye-contact (#missedthebedsidemannertrainingatmedschool). He looked very panicked, asked gruffly “are you alright?” and looked furtively around for a nurse or someone who may be able to help deal with this show of emotion. Very different to the welcome I had at my local MS therapy centre.
It seems feeble to say now how important the work of these volunteer run centres is. It is for many people pretty much the *only* support they get when facing MS. So, if you have a diagnosis of MS put “MS therapy centre” or something like that in your search engine because you may find a huge amount of support that you may not find out about from your GP or Specialist. My local centre is run entirely on fundraising, membership ‘fees’ and donations. It is run by volunteers (many with MS) but do not let that put you off or think it’s anything other than a hugely professional set-up. It offers a wide range of therapies including physiotherapy, acupuncture, oxygen therapy, counselling & reiki at heavily subsidised ‘donation’ prices (I paid a £10 for my counselling session). Most importantly it provides a place where you can know that people really understand how you are feeling. Visiting the centre was a massive step psychologically for me toward coming to terms with my diagnosis. It was also very moving to be welcomed so warmly and to meet people who might *actually* have a sense of what you are going through. And anywhere you can be a rambling weirdo with your cardigan on back to front and inside out and still feel okay, is getting something right. 😉