Friday, 20 January 2017
A brand spanking new year of hopes.
Happy new year folks! How was everyones Christmas and New Years?
Luckily we managed to get all of our festive shopping done in time (note to self, start a little earlier next year to save any panicking!) but we still had a super busy time, as we have done for the last few years, because of Hunter's birthday being on Christmas Eve. We had a family day out on the Friday and took him to an Adventure Farm which he loved and then had a little tea party with his closest family on his actual birthday. We then had another jam packed day for Christmas Day and after seeing lots of family, we cooked our very first Christmas dinner for my dad. Unfortunately, Hunter caught a nasty sickness bug which started during the early hours of Boxing Day and when he finally started to get better, I managed to catch it - just in time for New Years! Ugh, that was not a nice way to start the new year! Isn't it funny how we can somewhat deal with all this pain our chronic illnesses throw at us, but when we are struck down with a bug or even a simple cold we just can't cope!? Anyway, it passed within a week (a wasted week where we had planned to spend some nice, relaxing time together as a family because Danny was off work!) and I'm back to just the normal everyday endo pains and this exhausting fatigue that just hits me when it feels like it! I think that's the thing I find most frustrating with my health sometimes - that there is no rhyme nor reason to it so you can't predict anything.
After the chaos of December and our poorly spells had passed, I've been spending some time trying to get myself and the house organised again and get a bit fitter and healthier (don't laugh!) and I've been looking at all things blog related and where I want to take this space.
I'm sure that by this time next year I'll most likely be in the same position as I am now and have probably only gotten a few measly posts written again, but I'm really wanting to throw myself in to it this year. I spent some time the other week updating a few things on the blog and jotting down lots of ideas on what I want to achieve with all things EMLWY this year. As I said a while back, I don't want this space to just be about me. I'd LOVE for it to be a one stop space for all things endometriosis related, to make it about all you lovely ladies too and give this disease a face instead of pages full of impersonal facts and figures. I have lots of ideas for new things to write about and a few other super big ideas that scare me so much I'm trying not to think about them but that I'm super excited about. You'll just have to watch this space on all that though and see if I can get my act together and start juggling things a bit better! Is there anything you folks would like to see here? Would you like to be featured in some way? Get in touch and let me know!
Me and Danny were absolutely sick of eating so much rubbish over the Christmas period so last weekend we started the Slimming World diet. Before Christmas we weren't eating too badly, all our main meals were well balanced and mostly healthy, with lots of added vegetables wherever we could fit them in, but I really needed to sort my snacking out and stop with the butter laden crumpets at breakfast time. I started having porridge which was much better but the snacking continued and then having so many festive treats in the house did nothing for our waistlines and it felt like all I ate in December was either chocolate or beige. By the New Year my body was craving fresh green vegetables - I even salivated at the thought of cabbage at one point!! So, as I said, we started the Slimming World diet almost a week ago now and so far I think we are doing really well. I might put up a little weekly progress post on here come Saturday - would any of you be interested in that!? Either way, I'll keep you posted. I feel really proud of myself for finally sorting my eating habits out a bit and I'm already feeling much less bloated.
What else has happened since September... ... ... ... Not that much to be honest!
I feel like my health is progressively getting worse again. Over the last few months I've started needing to take painkillers again at period time. At first, it was just on the worst day where I was bleeding the heaviest (which has started to get much heavier now), then I needed them for the entire time I was bleeding, then it was a few days before hand too and now it's usually a week beforehand, a week (or 2 or 3 weeks - or 7 months! - who knows how long my periods are ever going to last!?) during and then the week afterwards. Now I'm starting to need to take them on odd days around this also. I've been getting ridiculously dizzy at period times and the weeks surrounding it too, to the point where I think I'm going to pass out and I have to sit down. I've also noticed that my fibromyalgia is definitely reacting to my periods and the pain I'm in with my endometriosis, and the week after my period is usually the worst week for me with fibromyalgia pains and fatigue. I'm starting to find that, like a few years ago, I'm only getting a few days break from pain and fatigue and bleeding and everything else now. So I know things are getting worse. I just don't know where things are going to end up! I mentioned a few months ago that I was getting lots of new little niggly things happening because of my fibromyalgia (I'm assuming it's the fibromyalgia anyway!), and that has just continued. I've started getting, hmmm, I don't know whether it's palpitations or what but it feels like my heart kind of skips a beat every now and then and it makes my chest go tight for a second and I have to gasp for breath. And then other little things, like my skin, it's completely changed recently and has been incredibly dry and every morning I have a red, blotchy rash on my back and arms, and my feet feel like they are on fire every night and they are so hot and achey. I really don't get what is happening to my body. There's always something up with it now!! I want to speak to a doctor to find out if all this is normal for fibromyalgia, but I'm actually worried he might just order me to be put down!
As for my acne, things have been very up and down with it but with the diet and a skincare routine which is working for me at the moment I'm hoping it might pick up... And stay up! I'll write a separate update on all of it for you though because it's been quite a few years since I last spoke of any skincare routines.
After being so undecided with it ever since I opened it, I eventually took the blog Instagram page down. I had initially decided to plug away at it and was enjoying it, but I found I was sharing all manner of information regarding endometriosis on there to only women with endometrosis, and that has always been what I didn't want to do! So anything blog/endometriosis/health related is now shared, once again, on my normal Instagram page (@thatgrrlshireen) so that any and everyone can read about endometriosis and if they don't want to read it then they can just bugger off. Simple. We need awareness so why should I hide away and be afraid of talking about it all!?
Yesterday I received the letter I had been expecting. In fact, I'm surprised I didn't receive it on the day my 'safe' period of 2 years was up. Today I had a 'Capability of Work Questionnaire' arrive from the DWP. Even though I had been expecting it, it all suddenly hit me and I've been in tears all day with the worry of it all. So once again, I'll have to be assessed by someone that most likely has only had a few minutes training on the health issues I live with, and who will sit there thinking I'm lying through my teeth because I have no physical signs of these illnesses. And then they'll write me off as 'fit for work', I'll have to appeal, they'll turn that down and then it'll all have to go to tribunal again. I just know it. And the thing I'm worrying about more than anything is that this time around, even though my endometriosis hasn't gone anywhere, I now have fibromyalgia and my osteopenia is now being classed as borderline osteoporosis, besides all that, I'm only on one type of medication. Even when I was at my very worst a few years ago and I was on a whole cocktail of painkillers, anti-inflammatories and anti-depressants, even when I was seeing a counsellor and a psychologist, they still didn't believe me, so how are they ever going to believe I'm struggling so much when I'm not on all these things? I know, as I mentioned above, that things are getting worse, and I've always said, if my health requires it, I'll have to stop breastfeeding and go back on to whatever medication I need to take. I know that at some point, paracetamol aren't going to work for me anymore and I'll have to find something stronger - that point will come this year for sure as they are already only just helping. It's the whole having to sit in front of someone paid to get you back to work, trying to prove you are unwell even though they can't see inside you. Anyway, I'll keep you posted on what happens. I have until mid February to reply to them so when I'm a little less upset, I'll have a proper look at it all.
Oh, one more thing before I go, I wanted to let you all know about a fab jewellery brand called Polypicnic which is run by a fellow endosister, Bianca. She makes hand rolled polymer clay jewellery and a portion of each sale is donated to Endometriosis UK. I was super lucky to receive a beautiful pair of her earrings for my birthday and I absolutely love them. You can find Polypicnic on Etsy and Instagram so head on over and check them out!
Well, I think that's about everything. If you are reading this (and have managed to get to this point!) firstly, thank you and secondly, please let me know! Come and say hey over on Instagram or Facebook or leave a comment below! I'd love to know that people are actually reading all this waffle! And, before I forget, and as I already forgot to write it before I rambled on through this whole post, happy new year folks! I hope you all have a wonderful 2017 and that your health is treating you as well as can be, and if it's treating you badly, I hope you manage to find some energy to kick it in the butt and show it who's boss!