docToRS WHAT DO THEY KNOW?
My rose tinted glasses have not cracked they just have a mighty big chip in right now…Ive always maintained that having a positive outlook is so very important when dealing with a chronic illness. My thoughts haven’t changed about this, its just of late things have well not gone according to how I want them to be.
For example, my GP wanted my bloods to check my liver function and ensure my medication was not impacting it severely, tick brilliant. Unfortunately, it meant I had to go without medication for a few weeks and so I went cold turkey so to speak. Now the main function for one of the drugs is to do with relaxing my muscles due to the spasticity, ie tightening up and boy did I notice the impact.
I live in a second-floor apartment without a lift, and I make no apologies for it, I am made to keep fit to live where I live. I have the odd occasion where I find a few steps hard but oh dear this week I just didn’t know where to begin, I couldn’t lift my leg high enough to the step, either one of them. Now I was home alone so I had no one around to lift my leg for me and no way was I knocking on another resident’s door ‘Oh Hi just me from up top, any chance you can stand behind me and lift my right leg onto each step?’ – not happening, ever! I sat on the bottom step planning my strategy, ok so just improvise. I then went about lifting my right leg with my left hand clasped behind my knee, the right hand on the handrail for balance and then I would swing up my left leg. I rested after each small flight of stairs. Two hours later, yes two hours I reached my front door, I did a fist pump as if I was John Bender (Judd Nelson) from The Breakfast Club got indoors phoned my Mum and burst into tears.
Following Mother’s excellent advice, I contacted my MS Nurse who called me on Friday. Her name is Julie, and she is absolutely brilliant as are all the team at Addenbrookes (Cambridge) for Neurology, in my experience anyway. Julie has immediately written to my GP providing recommendation for my medication. It’s funny because Julie’s experience with MS patients far exceeds that of a GP but she can only recommend. I’m not in any way dissing my GP they were looking out for my wellbeing I’m just not sure they really knew the impact.
Anyhow I’m back on the right road again, albeit slowly. I have realised that my ‘yea I can do this’ may need some further adjustment. For example, I was due at a team meeting this week and ignoring the fact that I can walk about 25m I committed to attending. In reality there was no way I could do it especially after my ‘steps, tragedy’ episode. Its funny cause I have been a vociferous opponent of a mobility scooter as I have said before images of Madge from Benidorm spring to mind. However, I do have a life to lead and well if you see me at World Travel Market 23 whizzing around on one feel free to stare, Id rather you say Hi, I will be the best dressed, coolest person on a mobility scooter though! If only Dior made mobility scooters.
The point of this article was to talk about Doctors and my experience to date. I need to go back a bit. I started really going downhill around 2016, I noticed I was tripping up frequently and my heels started to get lower and lower. I didn’t really pay much attention and just carried on regardless. The following year I secured my dream job, and I started getting worse so much so I was avoiding travelling as much as possible, slightly tough when you are meant to be a Sales Director. Everything was taking me so long to do, especially walking. The benefit of the job is that it came with private health and so I went to see a Neurologist at the Spires in Cambridge. All the while I was self-destructing in a job I had wanted for so long. The inevitable happened and I was diagnosed with MS and I didn’t know which way to turn. I just decided to turn inwards, and no one ever knew well until now, I guess.
The Consultant couldn’t tell me which type of MS, I was told I had lesions on my brain and cervical spine. And that was that, I was instructed to check in with my GP, tell the DVLA and not Google anything about MS. Of course, what is the first thing you do? Google it! I don’t know if my Mum will appreciate me saying ‘I am fortunate that Mother has MS because I have benefitted from her experiences to date’. Don’t get me wrong if it could just be me and not her Id rather that and she says the same. My Mum Anita is Miranda Hart (Meryl Streep) from Devil Wears Prada via FaceTime ‘Stretches! Exercise! Eat! Drink Water! Rest!, that’s all!’.
Now I find myself back in the realms of the NHS for my MS. I’ve already mentioned Julie and how brilliant the MS Nurses are. I also have a Rehabilitation Consultant in Clinic 42 at Addenbrookes and Dr Anwar also has my upmost respect. We don’t always agree but he is looking after my wellbeing as he is after all the specialist and as I tell him I’m the specialist of my own body. That said he is accurate and I’m the optimist, he just wants me to make life easier for myself and I have this knack of making things harder because I don’t/won’t listen – probably sounds familiar to some.
My first appointment with a Neurologist at Addenbrookes was a disaster, he specialised in Epilepsy and not MS. After telling me this he then wants me to get up on the bed and remove my shoes and socks! Oh no I’ve not had a pedicure for ages, he’s gonna look and think Shrek has just arrived! All the while he is prodding my feet and toes I’m apologising for not having had a pedi, the look he gave me was priceless, as in that’s all you are worried about!!
Fast forward to my latest appointment with a neurologist, the most amazing Professor Stefano Pluchino. Part time consultant and a fully-fledged Professor at Cambridge University working with the MS Society to find a way to improve the lives of patients with progressive MS. When I arrived for my appointment, I was on my rollator and the waiting area seemed eerily quiet.
My name was called and off I roll in slow motion to the consulting room, I walked around a corner and boom a packed waiting area and everyone was so quiet. The Professor was directing me to the room which was the furthest away to which I replied ‘Seriously you expect me to come all that way’ obviously with a smile on my face. I did raise a few giggles from the waiting patients, one even saying to me ‘take your time, don’t rush!’, I mean a sloth would have been faster than me. All the while I’m under the gaze of the Professor ‘I know what you are doing, you are looking to see if I lift my feet’, he laughed and said come on in here…
My consultation was brilliant albeit I left having to have a new MRI with contrast (the dye), a lumber puncture, copious amounts of blood tests and my registration for the MS Society’s Octopus trial for Progressive MS was complete.
As a result of the above I now know I definitely have Primary Progressive MS, this means I’ve never had any periods of remission it’s just been a downward trend since the initial diagnosis. That’s a bit of a bummer really because I always thought I could fight and be me again. However, the good news is that I have no new lesions on either my brain or cervical spine, this does not mean I could be a back up dancer for Beyonce though, shame (tbh even without MS this would never happen). It’s a fact that I am who I am , I struggle with balance, walk slowly with an aid and maybe dare I stay a mobility scooter, have heat sensitivity ie I cant lay out on a sunbed anymore – nearly as mortifying as not wearing heels! All that said I’m not getting worse, sure physical things are tougher so I’m fixing that chip in my glasses now and I’m registered for the Octopus trial and may potentially be able to take part!
When you find the right Doctor/Nurse who are specialists in their field it matters, and I have the utmost respect for everyone I have encountered at Addenbrookes. I will take the win of having no new MS activity and will try my best to work on my physical strength as much as possible. I know my limits and will finally learn to say ‘no I can’t do it that way but I can do it this way’.
Have a good Summer, thanks for reading. Attitude & Application it matters!
