It's been a long time since I last updated my blog or had any real interaction on social media, there's a lot going on at the minute and it feels like the walls are closing in a bit. I guess I need to find my voice again. I've written other posts updating the situation that we find ourselves in but I can't seem to finish them completely which tells me it isn't time for that part of the story yet. I will recall the tale of my surgery and recovery another day but for now be assured I am the proud owner of one stoma named Sophie who saved my life and I am very happy with. Having the illeostomy surgery was the best health decision I have ever made. Even though it wasn't really a decision as such!
There's so much that I want to say, that I feel like I need to say but let us just see what comes out tonight shall we? I've been suffering with depression for a few months now, it's not something I've decided to share with anyone really apart from a close few, it took an enormous amount of courage to admit that I was suffering with depression and the low days were indeed more then low days and something much darker had crept in. I had three days where I completely broke emotionally. I found myself on mothering sunday sat on the bathroom floor (lord knows how I got there) howling but silently howling because I didn't want Amelia-Rose to hear. At one point Tony came in and told me to get up and I said to him 'I don't know how' and I meant it. I literally didn't know how to get up off the floor. I had hit the bottom and I wasn't sure how to get back up again.
After that terrible day I knew I needed help. Even though I still retain the ability to look like myself on the outside and say all the right things and wear the right smile I knew that on the inside I had numbed to a point beyond recognition. I didn't know if I would ever see myself again.
Since that day I have been working on myself and I am trying to wrap my head back around the practise of mindfulness which has always been a great tool in the past. What I am is completely overwhelmed by the future. I don't have a joint that doesn't hurt anymore, I've lost the use of my colon already and now my bladder has stopped working (in that I can't go not that I leak!!) which makes me nervous about what may be next. Unfortunately I am back to throwing up whatever I eat which kinda sucks as I thought that would be ok again forever. I suppose it was more like a reprieve then a cure.
I volunteer up at the school two afternoons a week and help out at food bank every wednesday. Thursday I generally spend on the bed because the pain is so horrendous from the day before. I said to Tony this week from now on I am going to call Thursday 'Hurtsday' as I basically lose that day of the week.
Ok so lets talk pain. The pain is awful. I mean really awful. I have lost the ability to remember what it feels like to not be in pain and I know most likely I will go to the grave not remembering what it is like to be pain free. Generally I am able to manage the pain but it takes very little to tip into the 'not coping' camp. For instance if I have all my 'normal' pain but then get a headache (which I suffer from more and more. They are like migraines) then I will be struck down and stuck in bed. If I pop something that doesn't normally pop it will put me in bed overwhelmed by pain. Don't get me wrong I don't become this hysterical wailing woman, I refuse to begin to cry because of the pain because I know if I start I don't know how I will stop but I do become bed bound and my 'go to' techniques that I use to help with the pain stop working.
I am trying new meds but so far they aren't coming close to managing my pain. I wish the NHS would fund alternative therapies so we could at least try a different approach but we can't afford to fund these things.
Tony was never able to return to work after I got very sick in October last year, he is now my full time carer and at the moment we can't see a time when that will change although I like to think it won't be this way forever.
Tony becomes frustrated because he feels like people don't grasp just how unwell I am and it leaves him with no one to talk to about it. I guess I am partly responsible for that though because I rarely let people in our wider community see me for how sick I am. When I see them I put on my make up and slap a smile on my face. I guess unless they know they aren't being given the opportunity to offer to help are they? Having said that though Tony is pretty vocal about how things are. If only people ask.
I am excited to be writing my blog again and get back on youtube, my channel has had well over 10,000 views now and the feedback I get is fabulous so doing that again will give me a purpose and a lift. I just need to make sure I make it a priority.
I am so exhausted with chronic fatigue now that I had to stop and take a break but I am going to try to make time during the day so I don't have to do it at night.
I am still singing, will I ever stop?! Steve and I have the musical sketches for about 5 new songs which is really exciting and we have a gig on the 12th June that I am really looking forward too. Regardless of whether Tony had to carry my butt to a gig and sit me on a stool and tell me to sing I would do it. If I could I would preform once a week at least. I love singing to an audience. The energy you can absorb from an audience is magical. I come alive when I preform. I really do love it. It's my passion. I love hearing people's stories after the gig and to learn how songs I've written have impacted on their life. That really is one of the greatest gifts I can receive.
I guess that is all for today. I hereby promise I will be better at updating my blog again. Cross my heart.
Until then though. Many blessings to you and yours
Love x
