Officially, chronically hair today, gone tomorrow!

Hello everyone and thank you so, so much for the lovely messages regarding my last blog post. I am overwhelmed and humbled at the support of some. 

Laying yourself bare for all to see isn't easy but in some respects needs to be done. It is not for attention but for awareness. The thing with silent illness is that those who have it, keep silent. Nobody wants to hear how much pain somebody is in or how low they feel and we know that. Only ask if you want an honest answer. If we say 'I'm OK or I'm fine' just remember that's probably when we feel our worst.

Today I would like to talk about a woman's worst nightmare and no it's not losing your keys, phone or favourite lippy. But it comes close to somebody discovering your secret bar of chocolate saved for 'that week' each month.
It's about losing your hair.

For a while now I have watched it escape down the plug hole with not so much as a goodbye or, It was great but I have to leave, It's not you, it's me. Just a cold, heartless disappearance. I could understand it if we had just started our relationship but after all this time together!

I am coming to terms with it now as it's been a long, gradual but still ongoing problem. 
I have considered contacting David Guest for the scalp formula he uses to cover his balding barnet!

The question is what do I do about it?

I have deliberated over this for many and hour at bed time when those little mind demons camp out and probe your brain with useless questions and those items you forgot when grocery shopping. 

I suppose the next step is to get it cut short so I can adopt the comb over to hide my 'friar tuck' patch. Rest assured I will not end up looking like a geography teacher from 1985 (no offence to geography teachers, or teachers of any subject).

The next decision I must make is to let the grey continue to sprout and invade, colour it all my natural brunette or funk it up. A good pal said 'You are too funky to be grey', I'll take that! 
I fancy a bold red but will it make my pale complexion a paler shade of dead? I like purple but have the same problem. Should I go blonde? Will I have more fun or still want to live in my PJ's and be even more frustrated that it was a lie? 
All this decision making makes me want to pull my damn hair out let alone watch it fall out!

This may seem a silly, un important, unnecessary waste of spoons to some but to me personally, it's big! 

Joking about my personal battles has always been my survival mechanism and has worked so far. If you can't laugh at yourself then you need to go and sit on a desert island and have a word with yourself!
But joking aside for a moment, the most devastating thing that could happen is that people begin to notice, whisper, point or laugh. Those closest will not I know this with all my heart but there are always going to be children in the world and nosey, outspoken non 'inappropriate' filtered gossips.

How to combat that approaching nemesis?
Learn to take a deep breath, smile (as usual) and answer honestly. My favourite answer will always be " I am making space for my halo or horns. I haven't decided yet"

I have discovered how strong my illness is making me mentally but breaking me physically. I will no longer suffer fools or allow myself to be made to feel un important or ignored. I am still here, I am learning to adapt and I hope others will too. Madonna always re invents herself, why can't I?
Stay strong chronicle warriors!

Thank you, much love

Carrie x

Officially, chronically Broken.

That's it then, it's official! 

I am officially broken.

Recently I was diagnosed with autoimmune disease and connective tissue disorder, under the category of 'chronic illness' . I don't understand it either but this is the beginning of my journey to an uncertain future, which I hope to share with you and we can learn together as we go forward.

There are many, many people like me suffering from silent illness that have very loud symptoms you simply cannot ignore.

I cannot speak for everyone who has a chronic illness but already I am getting the usual, predictable reactions from people.

"You don't look ill"

 (thanks, I think!)

"Why are you so tired all the time? Can you not just get an early night?"

 (If I went at 8pm or 1am I would still feel the same and that's not guaranteed that I will actually sleep. I may even need 1-2 naps during the day if I have the chance let alone the time!)

"Do you think you may be depressed or feeling down or stressed?

 (I know how I feel and of course I have bad days but who doesn't. If I was depressed would that make a difference, make it more acceptable, understandable?)

"You will feel better in a few days!"

 (No, no I won't, it only gets worse.)

"We all feel like this as we get older"

 (I'm not in my 40's yet and was probably born with this curse, do I look old? I bloody hope not!)

"Keep thinking positive and you will snap out of it" 

(you cannot 'snap out' of any silent illness be it mental or physical so I suggest you snap out of my way please, thank you!)

"It's not serious or life threatening so I wouldn't worry"

 (Oh but it just may well be! but thank you for your concern.)

"At least it could be worse, it could be cancer"

 (Did you actually just say that?)

"When will you get better? 

(Forgive my hysterical laughter, oh , was that a serious question?)

"We all have aches and pains, just think positive and get on with it!"

(O.....K....!)

I could go on but I won't, like I don't in daily life because somehow from somewhere I have to find the strength to make it through each day before collapsing with exhaustion at the end of it.

"What does it feel like?"

from my own personal experience it feels like you have been hit with the worst flu virus ever known to man that smacks you in the face the second you wake and clings on to you through the day, becoming heavier and heavier until you cannot carry it any longer. And whilst pushing through what feels like gale force winds as you walk you have to complete daily tasks previously taken for granted. Each task leaving you more exhausted than the former and taking longer to complete. Some days my digestive system doesn't want to play the game. Just the thought of eating creates pain knowing how much pain actual eating will cause. 

Have you ever swallowed a drink or food that is too hot? That burning sensation, that is in my stomach and intestines through to the bowels for days at a time. It will go as suddenly as it came (that's a very good day). 

You know that feeling in your legs when you have had a really long day at work then gone out shopping or even a night out afterwards, squeezing a dog walk in? That is how my legs feel on getting up.

Then there are the 'spoons'!

These are what we name in the 'chronical' world the tasks we complete and what it takes energy wise to complete. I am yet to still get my head around my personal spoon count as I have not made the transition from being a typical human to a broken one. I still run around like a headless chicken thinking I can do what I could twelve months ago. 

Work it baby!

I do work, two jobs at present in between being a wife and mother. 

I find it overwhelmingly exhausting but this does not mean I cannot work or need to give up working. I just need to decide what tasks I can delegate to others be it in the home or at work. Not only am I still adjusting to my broken self, but, so are they! I have always had a very strong work ethic which is probably my biggest demon at the moment as I will not give in. Nobody in the medical field has told me to stop and until then I will push on and draw from what dignity I have left (which actually isn't much when you have given birth!).

I enjoy the social aspect of working and the fact you are continually learning and growing, gathering new skills each day. The laughs, the highs and the lows you share with colleagues daily is what keeps you going, well it keeps me going! Some days I don't feel like laughing, some day's I don't feel like talking but I'm still here, inside the crumpled shell. 

Wedded bliss!

I am married and have two sons, 3 cat's (one has moved out to a quieter climate, her own choice) and a 6 month old puppy, a cockerpoo. 

All these amazing beings were in my life before my diagnosis and hopefully will be for the foreseeable! These are who suffer the most from this curse. Of course I have the daily physical struggles but they now have to get used to the fact that the old me has gone on a permanent vacation and have been left with this shadow. I don't think they will ever truly understand or comprehend what it is like or what is to come but I hope they will walk with me until I reach my final destination. I know I can be testing, frustrating, boring and extremely forgetful and very grumpy at times. Unfortunately, that's how it is now. The boy's are being fantastic and stepping up, helping and walking the dog and so on but, I cannot help but feel guilty and sad for them that I am not what I once was. My love for them and overwhelming sense of pride will never leave me, that I am certain. 

Then there is my long suffering husband! 

I cannot do all the household jobs/chores like I could a year ago. Sometimes making the bed doesn't happen, the dishes are still there when he gets home, he has to pick me up from work now I cannot walk home after a full days work. I am barely awake in the evenings and if I am, I am too tired to talk or listen. I cannot give him the future he once saw, the growing old together and going on new adventures, the retirement bringing more time to do things. My biggest fear is that my family may grow to resent me for the burden I may bring. I have every faith they will not but who can say what will happen? 

There is a grieving process that comes with a diagnosis like this that you must allow yourself to go through to keep you moving forward.

Firstly I felt upset, upset for the future I was planning that is no longer certain, but definitely not unreachable. Upset that I have to cancel plans due to feeling to exhausted to even get dressed. Upset I cannot do all my son's wish me to do as even my thought process has changed, my memory. There is a 'brain fog' setting in that is so draining I am tired before physically doing what I am thinking about doing! Playing a board game is exhausting, watching a film is exhausting, engaging in conversation is exhausting.

If I do go out socially it's becoming less of an excitement and more of a chore as I know how tired I will be before I am tired. 

If I have a few alcoholic drinks on these such occasions I think I can have a dance then cannot walk for days later without agony and stiffness. Dancing is what I miss the most and will continue to miss the most the less I can enjoy it. I feel that I am letting my loved ones down for not being the woman I was a couple of years ago, for being less able to do all they need of me. 

Secondly and the stage I am still at is anger, anger at myself on a daily basis for not being able to do all I need to do, want to do or am asked to do. Angry at the life I was planning but will not accomplish. Anger that I am becoming a burden to my family, husband, children, friend's, employer's, work colleagues. 

Thirdly acceptance, this is still on the horizon for me as I cannot accept what I don't yet know or understand.

Does chronic illness define me? No.

I will continue to be who I am but a stronger, more determined and optimistic version of who I was. Of course I have bad days that just getting up is the first struggle of many until I go to bed again (often with broken and little sleep)

I do not know if my life will be shortened yet but I do know it will be limited. 

I do not know how much my own immune system has damaged my internal organs yet but hope that the near future will bring some relief and management. 

All of the above descriptions do not take me over, please know this.

I am still me just a little slower. I do not want people feeling sympathy or sorrow but I want them to see the strength in me that I draw on daily, hourly. I want to laugh and smile, I want to see the world, the beauty in nature not these four walls all the time. If I cannot come to you, please, come to me. I am a person, a human. It's not contagious, I won't drop dead on you, you can still give me a hug and touch me, I won't snap or break. If you want to know, just ask!  Still invite me to whatever you are doing and I will do my up most best to be there! I may say no more than yes these days but I have to, to conserve my 'spoons'. Yes I may have bad days, sad days but that is when I need you the most.

Fellow warriors, please comment and engage with my blog so we can learn, grow and beat ignorance and myths of this cruel body snatcher together. Non warriors please also engage and we will try and gather a better understanding of how we can keep moving alongside one another in the rat race of life.

Thank you for reading and trying to understand what I and many others still don't, Hopefully we can achieve this with a bit of humour along the way.

This has finished me off for the day so off to bed I go. I will be back once I have a little more of an Idea of what happens next and perhaps I'll have a name for my body snatcher! 

Much love

Carrie xx