January’s roller-coaster 🎢 ride

January’s roller-coaster 🎢 ride

2018 is approximately one twenty fourth gone (a bizarre opening I know), and I already feel like the year is going to be a tough one. After a number of good months of weight loss I found with the indulgences at Christmas I encountered my first week of gain. No big deal really but getting the discipline back has been harder than I imagined and I’ve had a week of staying the same. A real kick up the backside, but with another 3 stone minimum to go, a kick I needed. There are foods I love and for many years I could eat what I wanted and with the amount I was able to exercise it didn’t matter. Things are massively different now and the inability to exercise coupled with a learnt love of food frustrates the hell out of me. If I’m honest, it’s the not being able to exercise that I find hardest. A run was valuable me time in decades gone by. 

Following on from Christmas we had a relaxing mini-break booked at centre parcs down the road from our home town. It was lovely to escape to the forest with my family and have some downtime if there is such a thing. It was our first stay as a family and I hope it won’t be our last. We were treated to a veritable feast of nature at our window each morning enjoying the breakfast we put down for them. We had lots of fun spotting birds, deer, squirrels and any number of other fauna.

We made some lovely memories, mad science, adventure of the senses and had a soak in the pool, that had good disabled access, large changing facilities with beds although these were available to all and no surprises they were always the ones wanted by everyone. I tell you when it comes to a larger changing room, toilet or parking space everyone wants to use it if only all the same people wanted to have the disability that makes theses a necessity not a luxury. I digress (a theme of my blogs). There was ramped access into the pool and wet side wheelchairs, the staff were well informed and even understood the difference between ambulant and non ambulant wheelchair users. The one downside was there was no way of booking an accessible pool side cabana as there was only 1 and being the largest this was always booked and not listed as accessible. This really was the only negative regards the swimming and activities we booked, although a bit more information on the website wouldn’t go amiss. When booking in we were given a permit to place next to my blue badge in the window of my car (available if you’re the driver) so I could leave my car outside the cabin and hoist my scooter/wheelchair in and out depending which one I was using. The adventure of the senses had an alternative wheelchair route so I could do 95% of the activities and the pathways throughout the site were a good standard meaning I could switch between using my mobility scooter to go on nature walks, watch crazy golf and the like and using my wheelchair to have something to sit on comfortably when going to eat. 

The weekend was a huge success and we left with big smiles on our faces and great memories to look back on. The downside of a peak like this is the payback I get for over exerting myself, pushing myself too far, maximum medicating and sealing spoons. We returned home 10 days ago now and I’m still suffering the consequences, increased pain, sleep deprivation, increased mood swings, lower daily function. In essence I’ve been a hermit other than the school run. It is times like this when having a friend as my PA has been amazing. He’s shopped for me, come in each day and done all the things he usually does and just left me to doze in and out of pain unconsciousness, it’s the best phrase I can come up with to describe my body shutting down when the pain is too much. I’m not really unconscious but I’m not really coherent either, it’s just what happens when my body says you know what I can’t deal with this pain. Sadly it’s for about 30 minute intervals as I either spasm or twitch and have to move slightly to get comfortable again. The payback for having fun is a b!tch but the one thing last year taught me with the loss of far too many friends is that life is too short to sit around doing nothing. The pain is never going away, the frustration, the good days, the bad days they are part of life and I have to embrace them. 

Each year I hope the new year will bring with it easier times, some minor miracle of a day out without two days either side in preparation and recovery, or people not having to plan things around me and quickly that hope fades away after a few weeks on the roller-coaster,although I try not to be too negative as I know there’s always others worse off than me and good friends going through harder times, whether it be physically or mentally or both, but for me personally I do wish there were some days where the roller-coaster was more of a relaxed cruise. 

New Year, New You?

If only it was that easy!!!!!!!! With each new year though there does come a fresh hope of change, of a new improved “normal” or, at the very least, not a worse normal! Living with chronic pain there is so many variables and unknowns it is almost impossible to set targets above and beyond getting up, showered and dressed each day. It doesn’t mean that you don’t set targets, you just have to give them a lot of thought.

I haven’t rushed into making New Year’s resolutions as I know how easily they can be broken and how deflating that is. After all January 1st is the first page of 365 page blank book and it is down to me, to fill that book with as much fun, laughter and enjoyment as possible. Having lost 2 1/2 stone in the last third of last year I have set myself the target of losing the same amount this year. Other than that my new year’s resolutions are to simply make the most of each day in spite of my pain, and to share more blogs about life with you all. Last year my blogs slipped away and I really want to make the most of this as a way of monitoring and sharing my journey with myself, and anyone else who wants to read along with me.

Have you made any new year’s resolutions?

 

16 Products That Help People Struggling With Painsomnia | The Mighty

An interesting article on the mighty that may be of help to people with painsomnia. I have a number of these products and although my blog isn’t and never has been sponsored or a way of making money I am sure many of you who frequently suffer from painsomnia will understand how important sharing this information is.

If this helps just 1 person I will be very happy!

The Mighty community shares the products they use that help them cope with painsomnia.

Source: 16 Products That Help People Struggling With Painsomnia | The Mighty

A weight off my mind and body

Back in August at one of my many regular hospital appointments I was asked by the staff about my weight. Not in an insulting way,  but I was having a scan and they needed to know I was under 23 stone. Needless to say I was shocked and although not angry I was mildly insulted. I thought how can they think I weigh anything near 20 stone let alone 23!

All my life I’ve weighed heavy and I can’t remember last time I was under 14 stone and I know over the years and especially since my car accident my weight has increased. However for me it had never become an issue to the point that I was concerned about it, well not until that day. Worse still was that when I was weighed to make sure I wasn’t going to break the machine 😂 😂 😂 I weighed just under 20 stone. Yeah my get in, in your face nurse, I’m well under 23 stone celebration was cut short as the realisation that I was nearly 20 stone hit me. Then I was put I the MRI machine where I spent the whole time in a panic and thinking if I was nearer 23 next time I went in they’d need to get me out again with a tin opener.

Being unable to exercise my option was to make the most of my newly appointed Personal Assistant and make a concerted effort to eat healthy and lose some weight. Friends have spoken highly of various diets and companies and I choose the one I thought would suit me. The difficulty was I couldn’t go to the meetings and get weighed so I was going to have to do it at home. Fortunately I have some good friends doing the same healthy living plan so with their support and encouragement I set up my own plan, bought what I needed and set a weekly weigh in day.

3 months has passed and I have lost just under 3 stone. I can’t remember the last time there was a 16 at the start of my scales but I was pleasantly surprised this morning. According to my tracking app I have just over the same to go again to get to my ideal weight, however I was 14 last time I was anywhere near that. To stay fairly close to what I weighed today would make me happy since it is now the festive period and hopefully this time next year I will be celebrating my target.

This weight loss not only has helped my own esteem (something I didn’t think had been affected), my mood and my body is better for it too. I’ve effectively lost the weight of my LG, my clothes no longer fit for a good reason and although I miss some foods I’m finding little amounts of what I like can still be eaten just in sensible portions. Certainly has been a weight off my mind and body. 

For The Billion | Martyn Sibley

This is an inspiring read, not only about overcoming adversity and learning to accept and persevere in life, but also explains what makes people disabled (the physical barriers like steps) and how everyone can play a part in changing the world we live in.

Martyn Sibley’s blog and story.

My personal story It was June 1999. There were wires and tubes coming out of my body everywhere. I was hallucinating. I was sure the nurse was my Irish grandma (who had passed away nearly 10 years before). Worst of all I was violently sick every hour, for days. I’d never been in hospital for… Continue Reading

Source: For The Billion | Martyn Sibley