Today my mind is racing so much I cant keep up with it. On top of this I’ve had next to no sleep due to my restless legs so I’m a fantastic mixture of moody and emotional. To my relief, both of the kids are off having fun with other people so I can rest my brave face for a day. So I have decided to write all my woes for the day (apologies in advance) hopefully granting me some relief from my chattering mind.
I’m kicking myself like you would not believe for having such a crap weekend. On Friday I started to flare up and I have spent the majority of the weekend sleeping or switching off by watching mind numbing rubbish on Netflix so that I don’t have to think to hard, especially about the pain. Last week I took the kids out for the day to the Zoo which at the time I was so proud of as I was already exhausted. Then the following day I still managed to stick to my plans of a birthday lunch and a hospital appointment, again, so proud of myself…until the consequences kicked in. Now I know we are supposed to be kind to ourselves and allow ourselves the time to rest and heal and so I did on Friday and Saturday, however Sunday I was desperate to catch up with some of my to do list. I managed one!!! Having no kids today I figured I would try even harder today but all I have done is put a load of washing on the line. Grrrrrr!
Last week I had my hospital appointment to have a seven day ECG. The machine is so bloody annoying. I’m pleased the appointment came so quick but I will be relieved for it to be over. For those of you that don’t know what one of these devices looks like I will explain as best as I can. I have a very attractive necklace with the main device on that clips on to a very itchy plaster right on my cleavage. There is then a wire that attaches to another itchy sticker just under my left boob. Now these stickers aren’t just itchy, they have a plastic circle in the centre of them so when i lie on my side, my no longer pert boobs flop to one side making the plastic circle dig in very uncomfortably. To top this, the lovely hot weather plus medication means I’m a hot sweaty mess making them come off or move about. Oh the joys! Below is a picture taken from the day it was fitted and as you will see I really was not wearing the best clothing. At least I am not an overly proud person and at the time I really did not care if people stared.
I’ve also had a weeks worth of anxieties building up with little release. My local friends are all off on holiday at the moment so the usual rants and giggles that keep me afloat are on hold until the end of the week. This has annoyed me because I don’t like the thought of relying on others to keep me sane, surely I should be able to manage this myself, I am a grown up after all. I have spoken to one of my pain friends about my current anxieties and she has been awesome as always, I just feel a little stuck in anxiety limbo at the moment. My biggest worry at the moment is good old fashioned finances and I’m feeling powerless to do anything to change our circumstances. All of my bright ideas of bringing in extra money to our household require energy, which after my flared weekend makes me feel even more powerless. Adding to this, last week I saw someone who whenever I see, I have a complete brain bomb because I miss them terribly but we no longer speak. When I saw them I was hobbling around and feeling very vulnerable resulting in a huge panic attack. One lovely friend did point out though that once the panic was over I did manage to go back in the room and put on a brave face, something I haven’t managed in two years.
Just so everyone knows so far my summer plan of sorting out the house is a working progress. My kids are not into it at all and even though Mike has made a mild effort, I’m still fighting the daily battle of getting them all to help me get the house more liveable. According to the kids, tidying is boring and they are bored being at home. It’s all good though, we still have a few weeks left so here’s hoping my fairy godmother appears and does it for me (wouldn’t that be AMAZING).
On a lighter, more positive note I have managed to reduce many of my medications recently. In the last three years I’ve swapped and changed so many medications I no longer knew which ones were most effective. So this year I decided to started eliminating or reducing them and I’m now down to only two regularly and one as and when needed. It hasn’t been an easy road and my pain levels are higher, but my energy levels have improved as well as my brain fog and fatigue. Its not a huge difference so far but I’d rather not be taking all of the medications long term. I was told by a pain consultant that you need to weigh up the side effects and the benefits of a medication to know if its worth sticking with. As I wasn’t sure what worked best I decided to start from scratch. Winter will be the test to know if I can stay off of the medications as that is when I usually up my dosages to allow for the extra flare ups.
I’d like to thank any of you that has had the patience to read this all the way through. Sometimes a good old moan is good for the soul and I do feel a little lighter having offloaded. I hope that you are enjoying your summer. Big gentle hugs to all x