Long Time No See

Weston for blog

I’ve not written a post in a long time and I am now hoping to return a little more regularly; providing I can think of enough interesting and informative things to say and of course if my health plays ball. I have a few ideas in the pipeline, so we shall see how we go.

Where have I been? Nowhere really, I’ve been settling into my new home, which I moved into last year and trying to get to grips with both my physical and mental health. I had a brief spell of doing a bit better and started doing some volunteering again, which was great while it lasted. Then my physical health and energy levels dropped off again.

It’s a cruel hand to be dealt with, but sadly all too common with chronic illness. You get a period of doing a bit better, having a little more energy, so obviously you want to make the most of it and do a little bit more. Then, just as you get a taste of what a road towards recovery might feel like, BAM! it’s gone, you’re back to where you started, or maybe even further back. It’s like a real life, never ending, game of snakes and ladders!

There are some positives from the last year, gosh has it really been that long? “A” and I managed to get a few days away on the coast, for some much needed sea air and days of doing nothing. A lovely opportunity to meet new people and make some new friends popped up. And I’ve had quite a journey in getting a better understanding of my mental health. All too often physical health issues and mental health issues come hand in hand, they’re like two inseparable friends. Commonly one can cause the other, sometimes they arrive independently of each other, but either way, they always have an influence on each other, whether we realise it or not.

In a future post I will talk more about my mental health, when I am ready. And I will certainly share with you my joy of meeting new people that I not only share a hobby with, but also feel I connect with on other levels.

Later this year I will also share with you my charity fundraising plan for next year, for many years now I have tried to do something to raise money for charity each year. Thinking of ideas has been more challenging since I’ve been ill, but I have come up with my hardest challenge yet for next year which hopefully shouldn’t affect my physical health.

Until next time…take care.

B x


An A* Friend with a Paddington Stare

I need to tell you about my wonderful friend, “A”, someone who truly deserves an A* in the friend stakes. We met through a mutual friend that we both worked with before I became ill. Very quickly we clicked, but it was the year I became ill that we became much closer.

Her marriage had come to an end and having been through marriage break up myself, I was there for her as best as I could, helped her move house and did a fair bit of work tidying up her new garden. This was a matter of weeks before I became very ill and I find it quite surreal thinking back to what I was physically capable of doing back then!

Anyway, the month after “A” moved my body completely gave up on me; I was unable to go to work or do anything that I had before. The following months I went through constant GP appointments, referrals to specialists, tests etc. until getting my ME/CFS diagnosis. Throughout it all “A” was there for me, believed that I really was ill and was one of the few people who had a real understanding of what I was going through. “A” has the autoimmune disease Rheumatoid Arthritis, so truly understood what it felt like for me to have my health rapidly decline, live with constant pain, be unable to sleep despite being dog tired and then having to deal with being diagnosed with a chronic, fluctuating but debilitating illness, with little or no hope of a cure.

Since then “A” has been my constant rock! Some of the things she does/has done for me are:  ensuring that I get out of the house at least once a week; checks on me by text in between times; endeavours to keep my thinking positive; keeps my “what’s the point?” moments in check; scraped me up when I hit rock bottom; enables me to go to the cinema, theatre and even the occasional few days by the sea; helps me run errands; helped me move house on a very cold February day and even stayed with me the first night, even though I had no heating, hot water or cooker! The list goes on.

“A” never has any expectations of me; everything is always done at my pace and in a way to suit my needs on the day. I can be completely honest with her, even on my darkest of days, I can cancel or change plans if I need to because I’m not up to it. She never judges, complains or criticises, but on rare occasions has given me a good talking to and a “Paddington stare” when required.

On top of all this she has on a few occasions driven me to my parents, who live 100 miles away in Hampshire, enabling me to attend important family occasions. And then just last week, dropped everything, took the day off work and drove me the 200 mile round trip to see my son who’d had emergency surgery; just so that I could see him and give him a hug!

I would quite simply be utterly lost without “A” and my life would be significantly poorer without her in it! Having such a very special and completely selfless friend is a great honour, but is even more valuable when you’re chronically ill and so many other “friends” have fallen by the wayside over the years.

“A” truly is a very special lady and despite her own health challenges is very generous and giving in all of her other relationships as well, I know there are many that would testify to this!

So this post is a tribute to “A”, my humble little way of saying thank you for all that you do, for me and for others and for your abundance of patience. But it is also a tribute to all the other friends, partners and family members who help someone who is chronically ill to face life’s daily challenges, to keep a positive outlook and to keep smiling.

So, to all of the A* friends out there, especially mine, THANK YOU from the bottom of my heart, you are all amazing and make such a huge difference!