restlesslegs-uselesseggs

[restlesslegs-uselesseggs]

PCOS HUH? Not so bad is it?

Monday nights just don’t seem to be my nights. Once again wide awake at dawns early light nursing a toothache (this thing really must come out soon) and left knee which feels like someone kicked me hard in the side of it. 

Anyhow, for todays topic. 

Part two of my triple score ailments. I don’t honestly believe PCOS to be perceived as “that bad” by the masses. Well I’m here to enlighten. 

As previous posts have mentioned, I became a mother at a relatively young age. The pregnancy started well but ended in Symphysis Pubis Dysfunction, Pre-eclampsia, a good 24hours empty labour after being (oh what’s that word....INDUCED, that’s the one) and then being set up on an epidural along with crocodile clips up the woohoo to be attached to the baby’s head and then rushed into an emergency C-section after the little bundle of joy decided he was going to try and strangle himself with his umbilical cord. I must admit I look back on that experience of the caesarean with some humour. Being drugged up to the eyeballs and chatting up the Dr floating around my head while the others cut open my stomach behind a blue fabric surgical screen that was backlit (by accident or design I don’t know) creating a shadow puppet show worthy of Tim Burton to be frank. As readers of my last posts also know, I was at this time, a single mother to be with my sister as my birthing partner. She was also unofficially my birthing videographer (luckily not at the actual moments of birth, but everything else around it including my dopiness after the epidural is lovingly caught on camera by my big sis) 

I didn’t want it to happen but I started mother hood unbonded with my baby boy. He refused to latch on to allow for breastfeeding and breast pumped into bottles at all hours for a good few weeks. I then unfortunately fell to the curse of postnatal depression and went on a rebellion which lasted around 6 months before the maternal instincts kicked in. During those first 6 months, my mother looked after her grandson, knowing I would come back in time. It was during this time that I met and fell for my current husband and who will always be known as my sons father, has loved him like his own all his life and no one would ever dare tell either one of them any different (The biological donor did a marvellous impression of the great Houdini and that will be the last you hear about him). It was also during this time I decided to have the implant inserted and at the time the one that contained hormones was recommended. it was only after setting up a home and becoming engaged within the following 6 months (I know what your thinking but considering we’re still here after 14years, there may be something to say about whirlwind romances) that we decided to try for our own addition to the clan and the implant was removed.

The rest you already know as such in terms of my last menstrual cycle being just around the time I had an x-ray on my legs at the start of my fibro journey around 13 years ago. 

We continued to try and try and try to conceive. I had blood tests upon blood tests and scans and all sorts, which is honestly quite blurry to recollect but I do remember my ultrasound scan coming back with showing cysts on my ovaries that my Dr said were not that big and could easily be ovaries of someone who hasn’t got PCOS. Not very clear you will admit. So we carried on trying. Hand on heart it was only around 2 or 3 years ago that we actually decided to stop hoping and left it at that. We love our boy to the moon and back but I had always wanted a large-ish family and to finally accept that that would never happen was more painful than I can explain, for both of us.

The above may not tell you all of the affects of PCOS and trust me there are more but may enlighten to one of the hardest to stomach, infertility. Its a soul crusher and I am lucky enough to have been able to go through the experience of pregnancy and birth myself, my husband however never has and unless decides he wants to try somewhere else, never will. This you can imagine opens my mind up to intense emotions of guilt, believing I had ruined his life by not giving him the chance to experience such things.  

There are several more symptoms of this syndrome which I am privy to including hair loss, excess weight around the middle that is a bloody bugger to try and shift and therefore give up in the end, excess facial hair (this one is a doozy for self confidence) and more. All of which we will look into in future posts but for now I need to take some more paracetamol, curl up with my new weighted blanket (another subject for future reference) and try to sleep for perhaps an hour or so before making sure the boy gets up for school and then nap again before my Art History Zoom lesson for college. 

Speak soon peeps 

[restlesslegs-uselesseggs]

13years of WTF!?

I will, throughout my writing, try to keep my language as clean as possible but do not expect a rose tinted, rainbow and kitten encrusted outlook on how things are...It’s just not going to happen. 

Being a noob, as the kids call it, at this whole blog thing I looked up blog prompts for chronic illnesses. Number 1 on the list was “write a letter to your pain”

uh huh. Well with time and a little exploration that may come later on but at the moment I want to document as best I can what actually has taken me to this point where I feel the need to talk about the issues surrounding chronic illnesses and mental health. Fun huh? 

Oh! Before I start, an update on last nights adventures with the teeth and pains. I ended up collapsing on my sofa at around 4am with my body pillow folded over to create a mountain to sprawl on and my hooded jacket on for warmth on top of the heating I finally decided to put back on. This visual delight was after a long haul of microwave bean bags on my jawline, paracetamols, hot chocolates, whole cloves stuffed next to my gums (and when that seemed insufficient, ground cloves rubbed into my gums), raising, stretching and pounding of the legs that would just not give up and when that didn’t work, several trips walking around the ground floor of my little cottage with my eyes practically closed bumping into furniture and I still managed to wake up about half 7 to scramble into some clothes, hitch a lift into college and finish my ceramics class! Boom! Mic drop lol. 

Also a good trick for anyone with gum or toothache, Sensodyne toothpaste...not just for brushing my friend! Rub some directly onto the area that hurts and it doesn’t completely go away but definitely takes the edge off. Safe to say I will making good use of Boots special offer of 2 for £7 at the moment. 

Anyway, returning to the subject at hand. The title of this post can potentially be self explanatory, but if not here’s the deal. Yes, I spent 13 years of my life undiagnosed and unaware of my fibromyalgia condition. 13 YEARS PEOPLE!! 

Reflecting back, my Drs and I feel that it probably started due to the trauma my body went through when I was pregnant and then the subsequent birth. No I’m not going to tell you how old I was but I was quite young. My body had already gone through some trauma however only around a year and half beforehand when I came down with Meningococcal Septicaemia, another one of my magical medical moments lol. About two thirds of the way through the pregnancy I started getting pain in the pelvic area and was finding it harder and harder to walk. Basically my bundle of joy had decided to press down on my pelvis which then subsequently snapped in affect and gave me the delight of continuing my pregnancy with Symphysis Pubis Dysfunction. I’d like to point at this point, I was a single mum to be living at home with mum and dad and my sister was my planned birthing partner. Hubby didn’t come into the equation until a month after the birth when he gallantly fell for me and took on my child as his own, and has ever since. 

My pelvis reattached itself as it does with SPD but I then started noticing maybe 6 months into motherhood that I was getting pains in my legs while walking. Initially I was putting it down to the extra weight put on with the pregnancy that just wasn’t shifting but eventually, no matter how much walking I did, things just weren’t getting any better so I went to the Drs who then referred me to get an x-ray (which also was the last time I remember having a period, but that’s another story for the PCOS posts) . Everything was normal. 

After that initial investigation most things are a blur as all I did was struggle on and on. We (hubby & I) were focusing on conceiving and with lack of periods etc nothing was happening and I went through countless blood tests and examinations and scans and consultations that I believe my brain has blanked most of it out. I do, however remember asking one of Drs whether or not they thought I was experiencing REALLY early menopause which was dismissed and which I’m still not convinced I wasn’t or am. 

But I digress...

Through the past 13 years I have jumped from job to job, being employed, being unemployed, trying to earn from home etc as I had no further education and no career path in front of me and with each job something would suddenly make it all intolerable and undoable and I’d be wiped out and looking for something easier. To me though, I just thought it was normal to feel like this after having a baby and being a mum, no one said any different. It wasn’t until I started noticing, around 2 years ago now, the cognitive deficiencies that comes with fibro that I was really starting to go mad and knew something wasn’t right. 

I wrote a list that was 2 columns, one A4 side of paper long of all symptoms and bodily functions that felt just were not right to my Dr, no joke and no I’m not a hypochondriac. More bloods were taken and surprise surprise, all normal. It wasn’t until i went to another Dr that things started to become clearer (and this is important, If you feel something just isn’t right and everything is coming back normal KEEP LOOKING FOR ANSWERS and definitely FIND THE RIGHT DR!! It makes all the difference). 

My mum had been researching to help me too and we were comparing conditions and ticking boxes on what all this could be and Fibromyalgia ticked them ALL!! I didn’t mention it to my new Dr and with a tearful explanation of what had been going on with my body and brain and one look at her screen with my medical history on it she said...”Have you ever heard of Fibromyalgia?” 

I’m not ashamed to tell you I burst into tears, flood gates were open and there was no turning back. My pains, my fears, my symptoms were finally being validated by a medical professional and I was NOT crazy!! 

Since then my condition has been verified by a rheumatology consultant and I’m now on medication to help me through it and I have finally embraced the fact that I cannot stand by a regular job, not one that requires physical activity anyway and with no non-physical skill sets, opportunities are not a knocking. 

So, here I am, returning to college to follow a creative dream of being my own boss as an artist, illustrator, animator and generally quirky in my own way. 

That’s it for today folks and remember these crucial points...

1. DO NOT DISMISS WHAT YOUR BODY IS TELLING YOU

2. DON’T GIVE UP LOOKING FOR ANSWERS

3. KEEP CHANGING TILL YOU FIND THE RIGHT DR

4. DO NOT LISTEN TO SKEPTICS, THEY ARE NOT LIVING IT, YOU ARE

Speak soon peeps x

[restlesslegs-uselesseggs]

INTRO: WHO, WHAT, WHEN, WHY?

As I sit here on my sofa at 1 in the morning, which is not the latest these conditions of mine have kept me up, with a screaming teeth (yes, teeth) ache, I ask myself the question most sufferers with the same probably ask themselves...why f***ing ME!?

Well there is no way I’m going to attempt to answer that question, so you’re out of luck if that’s what you’re looking for with this blog. 

I don’t have answers, I’m not a medical professional and I certainly don’t class myself as any sort of guru master. 

So why write a blasted blog in the first place I hear you yell at your screen? It was actually my lecturers fault (”OMG she’s a student not long out of nappies!!”)...gotcha again. I’m a mature full time art student who has returned to the educational system after 15years. Anywho, back to my lecturer. After my 1st assessment of the course, I was rewarded with some feedback that had a suggestion in it about keeping a diary of my Fibromyalgia. 

Neat idea I thought, however I’m useless at keeping a diary. I can keep a general diary with to do lists protruding from the spines, but cannot seem to muster up the oomph, as my mother and late grandmother called it, to actually write about my day and I do spend rather too much time on social media and thought that I could give a bash and see how I go. 

I’m warning you all now that Fibro has rendered my vocabulary down to minimum functions and so I ask for you to bare with me and not comment on such issues like spelling or grammatical errors as there really isn’t much point to be honest. 

I suppose the real purpose of this blog is to not only document my life with these problems but to also let other sufferers know you are not alone (I’ve wandered into a sci fi movie script now) and to maybe give you a laugh every now and then when I recall such times like when I couldn’t remember the number 25 or when I walked through a pair of hospital doors and fell into them as if I were drunk and other stories that until I put my brain into power up mode, I cannot remember at present. 

I would also like to offer a shoulder. If you would like to message me privately to let off some steam, have a giggle or compare treatment outcomes then feel free and I will respond as soon as I can. 

Well that’s enough for an Intro I think. Don’t want to bore you all on my 1st post. 

Still with me??...lol We shall see. 

I’m off to heat up my bean bag warmer thingy and my hot chocolate and try to consider how I’m going to survive college tomorrow...no, today. 

I’ll be back. xxx