If I’m honest, I really don’t look forward to going out that much anymore! I used to really enjoy going out for the day, be it to the seaside or just into town.
Maybe it’s my ego, or maybe just the fact that I know how bad I will feel the next day. Right now, whenever I venture out, all I can think of is the baggage that has to go with me, not least, essentials like my tablets and the wheelchair! Deciding where to go and where to park the car also adds to my stress. I often think it would be easier just to stay home.
Quite recently, my daughter Charlie, my mum and grandson Ryan had planned a day out for me to the seaside. For the reasons I’ve mentioned, I was dreading it. But I couldn’t bring myself to let them all down. Could I?
We had been visiting this seaside town for many years. My mum had taken me as a child and as I thought back, I remembered all the happy times. I also remembered taking Charlie there when she was young and now going back with my grandson was the icing on the cake. Unfortunately this visit was different given the challenges I now face. But I told myself that shouldn’t stop me from having a good time and making more memories……should it?
My daughter packed everything into the car, including me, and off we went. 3 year old Ryan was excited as we’d promised him a ride on the fairground and that he’d see the sea and play in the sand. We arrived nice and early, parked the car and off we went for refreshments. My mum was really looking forward to going to the market and having hot peas. But first, we had to take Ryan for a ride on the fairground.
I especially wanted to take a photo of Ryan and Charlie on this ride because I’d taken her on it many years ago. I was determined to do it……at all costs! You just don’t realise all the ramifications of conditions like CMT and Parkinson’s until you try doing something that would be easy for the average person. What I mean to say is…everything seems to take……..forever!!! First, I had to position myself. Standing up with the help of my crutch then getting my camera phone out with the other hand, as it’s the easiest way for me to take a picture, one handed. And I did it!!!! Project accomplished.
From there, we went off shopping, having a good rummage through the Main Street. Me in the wheelchair and Ryan in his pushchair. You’d think being in a wheelchair would help….but I’m not so sure. I can’t walk very far but at least when I’m walking I’m independent and I can go where you want to go. But when you’re in a wheelchair, you go where the person who is pushing you wants you to go! Don’t get me wrong I do appreciate it and I know I have a tongue in my head, but it’s still like losing a part of my independence.
After a bit of shopping, we decided to have our lunch. So, off my mum goes to get her mushy peas. Off I go to get a pot of cockles which I was really looking forward to. It turned out to be a lot of hassle, or a bit of a laugh if you look at the funny side of things!
First I had to work my way over to the stall but because there was a bit of a drop in the pavement, I bashed into it. The stall was quite wide so I had to lean over it and pay with my shaky hand. Hilarious! After having cockles and thoroughly enjoying them, Mum went to sit on a bench and we moved to the chip stall. Having got our chips, we manoeuvred me over to join her. It was so funny, as I had a tray of chips resting on top of my bag that was on my lap. I thought to myself…either I’m going to get there with all chips intact, or the birds will have a really nice lunch. 🙂
But I made it!
Then I picked up the tray with the wrong hand, the shaky one, and spilled the vinegar and a couple of chips went flying. Despite all this, I did really enjoy them. It must have been all the effort it took to get them in the first place!
After lunch, we made our way back to the front. It was such a beautiful sunny day, we thought we would relax there and Ryan could play on the sand.
This part of the day really did frustrate me. I got to the point of feeling not only frustrated but also quite angry and sad because I wasn’t able to join my daughter and grandson on the beach. The fact is that being in the wheelchair for anything longer than 15 – 30 minutes knocks my legs out completely, so my legs were totally gone from me at this point and transferring from wheelchair to beach was just not possible.
However, I did manage to take some pictures. After Ryan had played for a bit in the sand we decided to have an ice cream before travelling home. It was the best ice cream I’d tasted for a long while.
Sitting in the car on the journey home, I may have been in some pain and my legs and feet were numb, but I can honestly say I’d had the most wonderful day. The memories of Ryan enjoying his first rides on the fairground and spending quality time with my mum, daughter and grandson is the best thing in the world to me. The laughter and good times are well worth the restrictions caused by my conditions.
So, I think I’d better rewind and scrub my first sentence. I intend to have many more days out like this and the memories will definitely stay with me for a long time to come.
About the Author:
Shelley Edwards Shelley is from Norwich in Norfolk, has been married for 28 years, is a mother of three and grandmother to five boys.
After being diagnosed with Charcot-Marie Tooth disease in her 20’s and
diagnosed with Parkinson’s in August 2012, she is still smiling with the support and positivity of her family.