You just need to get out more……..


Before I start I would like to explain that I have always been a fiercely independent woman. Some call this being a stubborn old goat and actually I think they could be  right as I still am :-).

Frequently people say to me you just need to get out more and everything will be fine! This is one of the most frustrating sentences ever!  Been diagnosed with Multiple Sclerosis is hard enough without people thinking they know what’s best for you, when they don’t actually spend the time to find out how this condition affects you personally!! They call Multiple Sclerosis a snowflake disease because there are over 50 symptoms of varying severity and no two sufferers are the same!

Generally I’ve pretty much got the hang of adapting and managing everything day today to do with my symptoms and surroundings. There is no such thing as spontaneity anymore, everything has to be planned in advance and I have to be aware of my exhaustion levels before we even think about starting an adventure even a simple trip to the opticians for example.

If my crystal ball had been fully functioning when I was looking at properties I would never have chosen to live where I live now! Obviously you don’t know what’s around the corner so you can’t completely plan for those unexpected life changes! The property that I now live in, is an old converted Victorian house, which is lovely as it has high ceilings and big rooms but to get into that property, I have to climb and old metal fire escape staircase. Parking is on street and first come first served, most people in our road has their own drives but the main problem with parking is the garage opposite us put their over spill out onto the road! This would be fine if I was able to walk the type of distance I need to somewhere I am able to park my car! “Get a disabled bay” people say to me (that is like buying rocking horse poop, not as simple as you think)!!!!!

So, a simple trip to the opticians! Today I was very excited about being out and about, being independent and taking myself to my appointment! This had taken some planning, I have been in touch with the opticians to explain about my MS and find out how close they were to where I would be parking. Unfortunately I have damaged my shoulder so I’m unable to lift and assemble my scooter from my boot. I had calculated that at a push I could manage to walk to this appointment from the car park. I knew that it would be a struggle and this would be all I would manage today. The post office is almost on top of the carpark so I had worked out that after my appointment I might just about be able to visit the post office before reaching my car to return home.

There is always a risk driving away from my flat to go anywhere as I know that on my return there will not be any spaces close enough for me to park! On several occasions I have had to spend two hours driving around awaiting a space close enough to my property (this is always a dangerous thing as part of my MS experience is needing the loo in a hurry), when I finally park I’m exhausted beyond belief  and  just need to be home and resting, but I still have to tackle my staircase before that can happen!

Leaving the car park in town today, I made my way slowly to the opticians only to discover it was a hell of a lot further than I had been told! Walking for me is a real struggle I have the experience of being on a ship without having sea legs, I cannot work out the levels of the ground so have no idea where my feet are going, I use a walking stick to help with the unbalance sensation  but the sensory overload I experience, from not only other moving objects /people and vehicles around me but my brain trying to process information through nerves which are damaged at the speed my body requires it, leaves me exhausted extremely quickly (thankfully I don’t experience this when sitting)!!  Being a stubborn old goat, I struggled and persevered but  I got there only to find all their systems are down and they are unable to see any appointments today! I am aware this is an unforeseen problem and cannot be helped, for me and all the effort I put in to get there it was a hell of a big deal! I then had to sit for half an hour to try and recover enough to be able to make my way back to my car! Once I had arrived I needed to sit again for another half an hour, to wait for the vision in my right eye to settle enough, for me to drive home!

Optic neuritis  sadly has left me with problems in the affected eye and when I partake in any thing physical the vision in my right eye deteriorates rapidly, it recovers again but it takes about 20 minutes!

I know there were circumstances out of my control today and the frustrations of not been able to use my scooter doesn’t help but there is still a lot of reasons why it is really hard for me to leave my flat and to go out and do things like I used to! It’s been really hard adjusting to this new life from being such an independent person who was continually out, to now being somebody who is continually in because of the planning, struggles and restrictions of going out into the outside world.

I made it home , without getting to the post office, to play the no parking space game for another half hour then had to sit on the staircase for awhile before attempting to climb it! This is the reason I have shoulder damage as I have to pull myself up the get to the top!!

It’s okay because I’ve booked myself in for a lottery win this week then I can buy myself a bungalow with amenities that are close by and all will be good 🙂 🙂 🙂

Thank you for listening, just wanted to share some of the frustrations of what used to be an easy everyday activity and raise some awareness  of a condition with invisible symptoms and the daily struggles that for the sufferer are very real!!

Hope you have a good day!! 🙂 🙂

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