Wow! Where is this year going? They say time goes faster as you get older and I can totally relate to that! This time of year is always fast paced for our family once we hit September and my daughter returns to school. Her birthday is in this month followed by the Bridgwater Fair which always comes to town for four days every year. Following that is the Bridgwater Carnival Concerts which all my family are involved in one way or another then my son’s birthday (16 years old this year which is making me feel very old!) and then halloween.
Then there is the Bridgwater Carnival which kicks off the circuit of hundreds of people taking part in an amazing illuminated night time parade – if you have never experienced it you need to – seeing is believing! (https://www.bridgwatercarnival.org.uk/) After the Bridgwater Carnival there is then a further six carnivals before everyone then takes a hard earned break.
It only gives us time to sneeze and then Christmas is here!
So, for those of you who follow my blog you will have noticed that I haven’t been on here for a while. As you know, my health dictates what I can and cannot do and I have to make sure that I use my energy in the right places at the right time. It is a hard one to juggle and something that people with ME deal with every day.
The summer months are sadly behind us now but I do have wonderful memories of our family holiday to Cornwall. I always find that I can do a lot more when I am near the coast. I believe it has something to do with the fresh sea air. Where I live I am close to a big power station, overhead cables and I live in a built up town. All the pollution in the air has shown to have an affect on people with ME. If only it was an easy thing to move to live by the coast – one day I hope that will happen. That is my dream.
Over the nearly five years of having ME my symptoms have changed and the levels of pain have varied. I once could feel really good in the summer months. The weather helped to give my system a boost and allowed me to spend many days outside doing things I want to do. Unfortunately over the years that has become less so. The summer now tends to drain me and my legs ache all the time (unless I am by the coast as I have said above!). I am constantly adjusting to seasonal weather changes.
As you know from previous blogs, every person with ME is unique and their symptoms will all be different. My life feels a whole lot darker, depressive and leaves me feeling scared for my future once we hit Autumn. I can vividly remember the pain of winter months and it is this that scares me. I am not ready for that pain. How can it be already September?
The Barometric Pressure has a big effect on my pain levels. When the barometric pressure changes, the air can cause joints to swell. The swelling in the joints places additional pressure on the fluid-filled cavities. The most commonly affected joints are the hips, knees, elbows, shoulders and hands. This is because these joints contain higher amounts of baroreceptors, which are sensors that respond to changes in pressure. When your grandmother told you her knees hurt just before a rainstorm, she may have been on to something!
The pain the cold weather brings with it is intense. I cannot fully describe it well enough for you to understand but I will try! My best description of it so that you can relate is imagine having the sensation you get when you have sat on your leg and you get pins and needles. Now imagine that all over your body – including your head. Then turn the frequency up to a point where no normal person should be able to cope with and you are nearly there. This comes alongside a whole host of other symptoms that range from headaches, extreme cold where you are freezing on the inside and nothing seems able to warm you up. You have more clothes on than you own and the heating and fire blazing. Hot water bottles, heating blankets all playing their part but still you are freezing. The pain medications don’t even touch the sides and then your emotions come along for the ride.
When my pain is high my emotions always play alongside with it. The unfairness of having to cope like this. The fact that 250,000 in the UK alone are beside me suffering in the same way and even more around the world. All the things that I have mentioned above like birthdays, Bridgwater Fair, Bridgwater Carnival and even Christmas that are no longer the same for me. The likelihood that I can make it to anything or take part in anything is very small. That’s a hard pill to swallow (pardon the pun!) when there are things you really want to do but your body just wont let you. No amount of sleep will help but that is all you feel you can do and no amount of pain medication will help either. You stand still while everything else carries on around you.
Forget the events or celebrations I have mentioned, I cannot drive anymore, I cannot walk in the fresh crisp Autumn air, run through a blanket of leaves fallen from the trees in the park. Some days I cannot even walk up and down the stairs. Some days I cannot leave my bed. No wonder my mental health takes a hit at this time of year.
It’s a battle but I do try and keep my mindset in the right place. There is nothing more I can do. There is nothing more anyone can do whether that’s friends, family or even the medical profession so until a cure is found or at least an effective treatment this is my lot. Suck it up as they say! No amount of crying, shouting or screaming will change the outcome, in fact that will only make it worse because stress brings out my symptoms and makes them much worse. Ok, there are days when I have to give into it, I have to let myself cry and rant that this life is so unfair, why me, why is this allowed to happen to people who have done nothing to warrant this prison of a life BUT, I try my hardest to keep those days few and far between. On these days I reach out to the wonderful ME Community on Social Media. They pick me up, remind me that I am not alone in this fight and that I have to keep going. We are, after all, ME Warriors.
I will keep going, I will keep fighting from my bed for myself and all the many others out there. We have to have hope, hope that one day we will be free from this prison. Free to do all the normal every day things that other people do because we are entitled to that life to. Until then, I will be here. Feel free to follow my blogs and share with friends and family but above all remember invisible illnesses are REAL and being believed is a massive thing. No one would fake to live their life in this way…believe me!
Faith, Trust & Pixie Dust x