Women Glow...again

Back in July 2015 I wrote the blog post Women Glow - https://wp.me/p4zBAs-c5 in which I talked about the night sweats I was having. I eventually worked out that the blood sugar was dropping whilst I slept and this was causing me to sweat profusely overnight. It wasn't uncommon for me to have to get changed 4 times, which lead to very interrupted sleep and a feeling of constantly being dirty and smelly. Neither of which I was.

Fast forward 3 years and now I have the problem of glowing quite profusely in the day time. It started back in 2017, initially I put it down to having gained so much weight in the previous 12 months but now having lost 3 stone (42lbs / 19.051kg) and the sweat is still pouring from me - if not worse I have to admit it's not the weight causing the issue. I personally believe that this is probably the start of the menopause, I'll be 45 next week so I'm in the right ball park. I can't tell you the state of my periods as having been on cerazette for many years they haven't paid me a visit since Christmas Day 2015. I am loath to come off the pill to find out because a) I will be an emotional mess, b) I could start fainting multiple times a day risking injury and c) periods for me are horrifically painful. The last time I came off the pill back in 2011 I had a period every 20 days. Gee that was fun, so you can see why I am not keen to experiment. Although I know at some point I am going to have to, just to know what is going on.

There is nothing that I can put my finger on that makes these sweats / hot flushes worse. I literally sweat from my knees to the roots of my hair. My face at times will go bright red. The heat I generate is quite exceptional for someone who has spent their life complaining they are cold. I had my reading glasses on top of my head the other day whilst a flush was happening. I moved my glasses to use them and both lenses were steamed up with condensation. I can't lie the flushes are making me miserable.

They seem to get worse when I am exposed to heat - which is massive pain in the arse especially when my go to pain relief is using a hot water bottle. I am using one at the moment and the sweat is pouring off me. I have lost count the number of times I have had a shower, got dressed dried my hair - the heat has triggered a hot flush and I have ended up having to change all my clothes because I am wringing wet, down to my knickers. I know it's an attractive picture I paint. Some days after spending ages sorting out my hair I have sweat so much its become a curly mop so I just have to tie it up in  a hair band. I don't have the energy to wash it and style it again. I really hate it as it leaves me feeling dirty and smelly. Jay assures me I am neither but I feel so unclean and when you don't have the energy to wash again - and what's the point the heat will just trigger another round of sweating? It can start to really get you down.

You may think I am being melodramatic but when the sweat is dripping off the hair on the back of your head  making it look like you've run a marathon or its dripping from your top lip, you'll understand. This isn't a pleasant glow on a warm day this is full on looking like I have taken a shower in my clothes. All my life I have barely sweat and now I am making up for 40 plus years of being bone dry. 

I have raised the subject of the menopause with my consultant and my gp. Both have laughed and tell me I am too young. I think this is due to EDS, unless people check my date of birth they forget that the person sat in front of them is not in their 30's but is now rapidly approaching her 50's - lets face it folks from next Thursday I am halfway there. Back in 2015 I had a blood test that showed I was producing luteinizing hormone. Unfortunately due to having a CSF leak it wasn't investigated further. This showed that my ovaries were not working at all which is premature ovarian failure. At the time it was when all my bloods were strange raised prolactin, low cortisol etc etc. I have no idea if it has been tested since. 

I know the sympathetic nervous system is responsible for sweating but I doubt that this has just suddenly decided to go awry. It is more likely given my age that this is the perimenopause or the menopause. But as the NHS now no longer tests for this how the fXXk will I ever know?

As a precaution I have bought a load of supplements - sage leaf, red clover and black cohosh and if these help at all I will report back here. If they don't I bought myself a pack of 12 flannels that I will make damp and put in the freezer - these will be my emergency cool down packs as keeping the fridge door open to cool down is a waste of electric and a risk of food poisoning! 

My other go to is to have a fan going whilst I  get my hair dried to try and relieve the sweating and dry it up before my hair gets frizzy. I hope to god the supplements help as I am on the verge of melting into a puddle.

17th October

For the last ten years I have written about how much I hate October and how this month always fills me with sadness. This year is no different. In some ways it is worse.

This morning (17th Oct) I woke up sobbing, as today is the 12th anniversary of our beloved first dog Travis' passing. He has been dead longer than he was alive, just under three years. The pain today is as raw as it was on the day we said goodbye. Why it is so bad today I don't know. Perhaps with everything that has gone on in the last 12 months ( losing Willow, Pam, Gran, mum having cancer - now in remission) it's all the stress just being released. I often wonder how it is possible that I can shed so many tears for a dog that was in our lives so briefly but he wasn't a dog to us. He was our boy and the pain of saying goodbye is something I will never get over.

Losing Willow on December 15th was hard but she had lived for 11 years. In that time she had been pampered and showered with affection. She had fought many battles herself having cancer, a pyometra both of which could have killed her. I had a sneaking suspicion in the months before her passing that the cancer had returned but it was internal. I know people thought I was crazy when I voiced my concerns, like I was wishing her life away but I know my dogs and I know when things aren't right. I have cried many tears over Willow but it is a different pain I feel with her passing. I miss her, I remember her fondly. The pain I feel with Travis is like a knife to the heart. The level of pain is not something that has ever gone away. I can talk about Willow without breaking down although some days it makes me feel terribly sad. Talking about Travis about 50% of the time will reduce me to tears no matter how strong I am feeling. It doesn't mean I loved Willow any less, it just means Travis' life was cut short and I mourn the time I should have had with him. However had he lived I would never have experienced life with Frankie, his nephew.

Poor Frankie and Mollie ( Trav's sister) have been desperately trying to lick my face clean of tears all morning. I am trying to pull myself together because I know the sight of me breaking my heart is distressing them. I hate upsetting them. They are my last links to Travis, Mollie is his sister born a year later from the same parents and Frankie, Mollie's son is his nephew. I never realised how much Frankie looks like Travis until you compare photos side by side. That's probably why I dote on him so much. After Travis passed away I said I would never have another boy dog in the house and then after Frankie had been with his new owners a week he came back to us as the children were allergic to him. His owners broke their hearts when they returned him. I have never seen a man so broken by a dog ( other than Jay when Trav passed away and my dad when his beloved Esme passed away). I shed a tear with them. At that point I was resolute that Frankie would be sold. Within a few days I knew I could never let him go.

And now Frankie is 12 and not in the best of health, Mollie is 14 and still bouncing around like a puppy but deaf as a post. A few days ago on her walk she was playing with another Weimaraner half her age and giving as good as she gets. Yes I will be devastated when pass away but I know that they lived full lives, surrounded by people who love them. Travis' life was cut tragically short and I think that's why I find it so hard to deal with.

I hate October particularly 17th and I probably always will.

World Mental Health Day

World Mental Health day was held on Wednesday 10th October ( today as of writing this). It's quite ironic that I am in a spiral of anxiety again. I am trying very hard to distract myself but it's very difficult when you spend your days alone for the majority of the time. 

When my anxiety gets very bad I tend to fixate on something. It can be really obscure, last time it was Meghan Markle now the Duchess of Sussex - don't ask me why it was probably as it was coming up to the Royal Wedding. I don't fixate of anything in particular it was just she was constantly on my mind. I know how very fucking weird that sounds. I don't have any control what I fixate on. I was worrying about how horrid her family were being to her and hoping that the wedding would go smoothly. See I told you I can fixate on the most bizarre things. All I can do is wait for the anxiety to pass and for me to no longer fixate on the issue.

Currently I am fixated on Frankie (dog), he had his 12th Birthday on Sunday and obviously that day was happy and sad because it also would have been Willow's 12th Birthday. As a double whammy it was my late Grandmothers birthday the day before, she would have been 90 years old. On top of that October is an extremely hard month for me as it's the month that hold the anniversary of our first dogs passing - October 17th 2006. The date is etched on my memory, it will never leave me, just as December 15th 2017 (Willow), January 6th 2018 ( Gran )  January 24th 2017 (Andrew), January 26th 2018 (Pam). The older I get the more dates I remember. Its something I can't help. 

Frankie is the centre of my fixation at the moment as he is a big dog who is 12 years old. He has a grade 2 heart murmur, arthritis, mobility issues and possibly a tumour growing on his back leg. He can't have any operations due to the fact he won't survive the anesthetic due to the heart murmur. I know that some time very soon ( I sincerely hope it isn't soon but I am a realist) we will have to make a decision that will break my heart all over again but will be in my boys best interest. What makes it hard is I am destroying the time I have with him now by fixating on this. Like I said it's totally out of my control. Until I get on a more even keel these intrusive thoughts will just continue. I have tried telling them to stop, I have used distraction. I have used everything in my arsenal and now when things are exceptionally bad I am having to use diazepam. 

When you have anxiety or any mental health issue there is no banishing those horrid thoughts from your mind as someone so helpfully suggested on social media. There is no just getting over it. You just have to ride out the storm until the anxiety cycle or whatever the issue is, is either alleviated through some sort of treatment or it burns itself out.

So please be kind with your words, don't rush to judgement. You really have no clue what another person is going through. Just be kind, sprinkle that shit everywhere, in every way that you can.

Peace Out xxxx

Mum

I look back at the time when I used to write two blog posts a week and for the life of me can't understand how I did it. I know at the time it would take all week to write those two pieces. I hadn't discovered sewing then and was desperate for something to fill up the long hours of being alone whilst Mr Myasthenia Kid was at work. These days I can struggle to come up with one post a week as I don't want to be forever moaning about my health but due to the fact I don't go out socialising and can spend many days where the only person I see is Jay. It can be incredibly hard to find that spark that inspires the next blog post.

At the moment I am struggling to sleep or even when I do sleep that it is good quality sleep. I am constantly feeling like I am semi conscious. In the mornings it is taking a few hours for me to become properly awake. I hate it when I am like this as it just feels I have wasted a few hours before I can do anything at all purely because in my semi conscious state I am so clumsy and not fully alert to attempt to do anything at all risks injury. When I am like this I quite often go off into a world of my own, minutes can pass before I realise I have been sat staring into space thinking of nothing in particular, I have just zoned out. Every part of me feels like it is on a go slow whilst I wait for my morning medications to take effect. It also means my pain levels are higher than normal.

Some of you who follow me on social media will know that life has been extremely stressful of late. I havent gone into massive details on my blog but now I feel is the time to let you know what's been going on. Back in July my mum went to her doctor's surgery as she had been experiencing some pain. During the course of an examination the gp discovered a mass on my mums ovary, not a little one a huge mass. Mum was referred to hospital pretty much straight away under the two-week rule ( for those of you unaware of the two-week rule, is that if cancer is suspected you will have tests and see a specialist within 2 weeks. I have been referred twice in the past under the two-week rule when I have discovered lumps in my breasts. Thankfully both times it has been fine.)

Before the operation my mum was in a lot of pain, the mass was increasing in size and was now becoming visible externally. Every time mum was examined she ended up in agony. It was a very worrying time for all of us. 

On August 13th Mum had a massive surgery, she had decided that although the surgeon had told her that they weren't 100% sure if the mass was cancerous there was an area that was causing them concern. They would possibly be able to tell her after the surgery if it was cancerous or they may have to wait until the mass had been examined by the pathology lab, that she would have everything that they could remove, removed to give her the best chance. So rather than it being a hysterectomy, she also had her ovaries removed, appendix removed, lymph nodes removed, cervix removed and all abdominal fat removed. This meant that should it be cancer there was nowhere it could hide and grow in. 

There were complications during surgery which meant another surgeon had to be called in to assist as mum had bowel adhesions - despite never having an open surgery in the past or even a laparoscopic surgery. She was one of the unlucky 10% of the population that develop adhesions without surgery. It possibly explains why I have developed such bad adhesions, if mum can have them without surgery and I have had around 5 abdominal surgeries.  For those of you who don't know you can get adhesions anywhere and they are bands of thick fibrous tissue, scar tissue that sticks organs / intestines together. They had to be removed during mum's surgery so that the cyst / mass could be removed.

A standard hysterectomy takes 12 weeks to recover from, due to the extensive nature of mums surgery she is looking at a 12 month recovery time. It's extremely frustrating as a few people have assumed that now that she has had the operation she should be back to full health. Peoples ignorance is really astounding. Mum was cut from just under her sternum to the middle of her pubic bone due to the size of the mass and the need to remove everything possible. 

It wasn't until the middle of September that we found out that Mum had cancer ( now technically the cancer has been removed but medically she will not be classed as cancer free until she hits the 5 year mark.) The cancer she had was very small but also very rare stage 1a grade 2 Endometrioid Ovarian Cancer. The mass removed was a cyst that had wrapped itself around the ovary and the cancer. It was 25cm in length so nearly the size of a rugby ball. Thankfully the cancer was contained and hadn't spread but mum will be monitored very closely for the next 5 years. Due to the nature of the cancer she can't have HRT to help with the loss of her ovaries, hormones could help it come back.

Obviously for us as a family this rapid turn of events was very shocking. My body gave out on me due to the stress and I ended up in bed quite a bit over the summer. Well that combined with the ridiculous heat. My mum was the very last person who I would have guessed would get cancer. She has been vegetarian since 1973 and went Vegan two years ago. She is a perfect weight for her frame and despite having Coeliacs Atxia was reasonably active. Out of everyone I know she wouldn't be the one I'd have said was likely to suffer with cancer. I was more likely - overweight, ex smoker not a brilliant diet. My mum really struggled with getting her head around being sick. 

She has told me herself ( and I checked before sharing here) that she felt embarrassed at the fact she had cancer, mortified at the fact she was ill. She didn't want to be seen as weak and vulnerable. She had been extolling the virtues of a vegan diet to anyone who would listen for the last two years, a diet that will reduce your risk of getting cancer and here she was two years in with cancer. It was made very clear to me that this diagnosis was not to be discussed, so other than a few of my closest friends no one knew what was going on. If anyone asked I would just say I was stressed due to life stuff. 

It's only in the last week that she has posted on her own Facebook page that she has had a cancerous mass removed. So after discussing it with her this morning to check it was ok I can finally tell you all what has been going on.

It's why I have been having trouble sleeping, pain issues, more migraines, vertigo etc. It made me feel utterly useless. I wanted to be able to support my mum but I feel like my body betrayed me. However it's been really lovely that I have spent quite a bit of time with her one on one. As many of you know I live an hour away from my parents and a lot of the time I am not well enough to travel. My parents have a caravan around 10 minutes drive away from where I live, so whilst my dad walks his dog on the beach mum comes to my house and we have a catch up for about 90 minutes. I have thoroughly enjoyed spending the time with her.

And some of you may have put two and two together and worked out why I made my mum the very special lap quilt for her birthday this year.

She is doing really well. Every time I see her she looks so much better than she did the last time. She is doing really well. Fingers crossed that we sail through the next 5 years with no issues.