Pink Haired Princess

Post does not contain any PR gifted products.  Post does not contain any affiliate links. Hi gang! Long time no see, huh? I'm not sure I have the adequate words right now for why I haven't posted since Christmas Eve 2022, but I felt I couldn't begin without any explanation at all, so here goes.  Basically a lot has changed in the past few years, whilst nothing has really changed at all! I know that sounds cryptic, but in a nutshell, I've become less and less able to do what I used to (for those that don't know, I've had M.E. since 2002), so blogging was something that fell by the wayside. 

Ah, it's that time of year again. Beautiful blue skies, sun's out, jackets off, sunglasses on, bare legs, sandals, yep even in Scotland, we've had a glorious couple of days (after freezing our bums off recently, but that's British weather for you) and we're all daring to ask "is summer really here?". I hate this time of year though, because I get serious FOMO. I long to be out there enjoying it too. People often say "oh the winter must be so tough on you"...yeah, snuggled up inside with my cosy blanket, the heating on, cups of warm tea and the gigantic chocolate stash whilst it's snowing, icy, windy and freezing outside, errr no, I know where I'd rather be! Yes I dislike the very long dark days, but I have no desire to go out on days like that. I'm usually pretty thankful that I'm safe and warm inside. That said, I'm not a massive summer fan. Last year was far, far too hot for me and I know people in this country are...

This is my umpteenth attempt re-writing this, I've been coming back to it for months and indeed there's a very similar one lurking in my drafts folder from February last year. That in itself is very telling of the theme of this post, I'm struggling. I'm struggling to blog, I'm struggling to share my 'life' on social media. I'm struggling to read or reply to the hundreds of emails that fill my inbox every week ( sooo overwhelming), I'm struggling and my body is letting me know that. We've had this conversation before (me and my body and you and I); I think it was one of my earliest M.E. On posts, where I said I'd no longer apologise for missing deadlines, falling behind with work or not doing something I said I'd do and yet a couple of years on, I've fallen into the same cycle and trap of saying "yes" to everything and thinking I can work like a 'normal' person. I can't, so why do I keep pretending I can? I...

Disappointment is how I'd sum up the feeling of 2018 so far. Towards the end of last year, I was tiring more easily, but put it down to doing more than usual during the festive period. It had also been an eventful 2017, with the diagnosis of gallstones and eventual removal of my gallbladder in June after 7 months of agonising, random attacks. It's no surprise that I spent a lot of the year in clinics and hospitals, which was a big increase on the activity I was accustomed to. Plus there was the after-effects of an attack, which I felt for several days and all the worry that went with not knowing what was going on (before diagnosis) or when I'd next fall ill. As well as physically, mentally, it took it's toll over the year. A year of worry and non-stop medical appointments is no fun for anyone. Besides this, the surgeon had warned me pre-surgery that going ahead with the operation could worsen my M.E. permanently. This was a big shock to me and one of the scaries...

I haven't kept you updated on the (possible) gallstones thing like I promised, because I've not been able for blogging and I keep half writing M.E. On posts but never find the time or energy to finish them (there's so much I want to say though!). I'll go into more detail about what's been going on during this time, but this post will summarise the process and appointments I've been to since I was first referred for my ultrasound scan (which follows on from my last post on the subject ).  I initially wrote this post a couple of weeks ago, but it's taken until today to finish, so I've edited a couple of dates and also added an update at the end.   I did indeed wait just over 6 weeks for my ultrasound (story for another post). I worried a lot during this time. What if it isn't gallstones? What if it is, but it doesn't show up on the scan? What if they find nothing at all and after all these months, I just get sent home? What if they find someth...

I haven't updated you with a M.E. On post since last year and there's many reasons for that. I have a half written post regarding the outcome of the scary meeting , which I can't quite finish and honestly have had so much on, I haven't had time. It's hard to write and my feelings regarding it, still aren't straight in my head, so it's difficult to explain to you, when I'm still unsure about the whole thing myself. Instead today I wanted to talk about being ill when you're already ill. I could make it short by saying "it sucks" because that sums it up frankly! Over Christmas everyone in my house had a cold of some sort. It was most definitely "going about" and I was hoping I wouldn't catch it. I did and actually mine turned out to be the flu, which was even worse. Obviously with M.E. I have symptoms every single day, which are actually quite flu-like (the aches and weakness and tiredness), so when you get another dose...

So before you read this post, you really need to look at the first part ( seeing a psychologist here ) which gives some background on how and why this meeting came about. In my last couple of sessions with the psychologist, we prepared for this meeting. It was hard to do though when we didn't know what the others were bringing to the table. Actually our last session had to be done over the phone and I never feel quite as relaxed with that as I do talking in person. So I didn't feel ready for this to be honest. It's such a hard illness to hold discussions on, because there's no right or wrong way to deal with it or no tried and tested method that works for everyone. I am constantly told that nobody knows what to do with me. They are frustrated. I'm obviously frustrated. So I wasn't expecting miracle cures or magic wands I'd never known about before. I didn't know what we were going talk about though. I wish I'd written this post straight aft...

A week past Friday, I was up and at it early. Well early for me or any chronic illness sufferer. Being alert at that time of the morning can only mean one thing. No, sadly not limited edition shoes, that's thankfully usually a more attainable 12pm! I had a medical appointment. A meeting actually. It's happened reasonably quickly (in the NHS world) and I was keen to tell you all about it and get my thoughts from the day down on paper (so to speak) while it was all still fresh-ish in my mind. A bit of background first and something I haven't told you, I'm currently seeing a clinical psychologist and have been since last year. It's not my first donder down this path, years (and I mean YEARS) ago, I was referred by my doctor in the hope that they could offer something new to try, as they were dealing solely (in my area) with pain management and chronic illness. Back then I think I baulked at the idea. How could talking about an illness that was disabling physi...

So things have been quieter than usual on my social media and blogs lately and that's because I've suffered another downturn with my health. The hard thing about writing about M.E. is the fact I have M.E.! Yeah it kinda gets in the way of me being able to lead a consistent blog life. I've typed and re-typed this post dozens of times during this period, because I know I can waffle (!) and more so than usual my concentration is limited and words and sentence structure get really jumbled in my head and I don't want you reading rubbish, no matter how much of an accurate account that might be of the current situation! So I'm starting from scratch and re-writing this post one final time and leaving out a lot of chatter, so I actually get it finished this time. I've been plodding along as normal (well normal for me) until one day at the beginning of June when I had an appointment at home. I'd felt fine that morning, but after the home visit ended, I was way m...

I'll admit I thought twice about posting this. Maybe even a third and fourth time actually. I've realised while I have an opinion on many things, I don't really like confrontation or causing conflict.  So, I knew talking about this would ruffle a few feathers, maybe hurt some feelings (even though mine are hurt every time this happens!), but it's not directed at any one person.  If you suffer from a chronic illness like M.E. or CFS, you'll probably be nodding at your computer screen reading this, others might not realise this existed or that it was an issue, so I'll try and explain it as best I can.  Though this letter (pictured below) probably illustrates it far more eloquently than I could. Someone gave it to my Mum after ripping it out of a newspaper insert, thinking it related to me. Despite liking the person that did this, the second my Mum said "oh I have a newspaper clipping for you..." my eyes rolled. Here we go again, I thought. However I r...

This past week and a half has been difficult for me. My parents are away on holiday for a fortnight, leaving me and my younger sister at home. She works full-time and I generally only see her for an hour or so at night as she has her own things to do, so mostly I'm on my own. Positives first, I'm really enjoying the peace and 'freedom' that comes from being on my lonesome all day. When I first fell ill, nearly 14 years ago, both my parents worked, so for many years I was home alone. It took some adjusting when my Mum gave up her work and more when my Dad retired a few years ago. My Mum talks (or sings) non-stop (total genetic thing), so it's tiring when I have to listen or talk to her whilst trying to write something for the blog or read emails. It splits my concentration, which is already depleted and takes more time and energy to do what I'm doing (different story when she is concentrating on something, but hey ho). My Dad (sorry) is really annoyin...

I don't make a point of talking about being ill on my blogs.  Though I don't go out of my way to hide it either. I reference it occasionally, usually when explaining a long absence from blogging! I've had it in my mind for a while (since last year or perhaps even before then) to make more of a regular thing of blogging about what it's really like living with a chronic illness. It's not like it's a big part of my life, it's my entire life (and has been for almost 14 years) and dictates everything I do (or rather don't ).  There's several reasons why I haven't spoken about it in-depth before. The main one being not wanting to come across as a moaner or to talk negatively. My blogs are my "happy place", they keep me going and I'm a firm believer in emotions being contagious (even through reading) and I'd really hate for this blog to be a depressing read or have you go away feeling sad and thus liable to avoid my blog foreve...