This week I’m mostly being a ‘normal’ person…

…. Whatever that is?! It’s certainly using up my valuable spoonage.

  
I just realised I can blog on my phone; I know, get with the 21st century.

I’m procrastinating because I’m literally the best at it.

Today I went to my new job

I’m thrilled to have found a new job, the people seem so lovely and the job itself totally doable.  It’s mainly coordinating home carers from a desk base, it’s very straightforward and not as pressurised as my previous stressful, traveling all over the county management role.  That role I’m sure contributed to two serious relapses, seeing me bed bound.  

Tomorrow I get to get up early YEY!

 
Did someone say 6am?

Ok I’m not a morning person, in fact I don’t know anyone with Fibro or chronic fatigue that is.  Tomorrow I get to meet some lovely customers so they can put a face (mine) to a name (mine) very early in the morning.

I don’t mind.  I think I told my boss the last time I got up that early was at Christmas.

How to declare conditions to new employers, it’s tough right?

I’m yet to declare officially my conditions, I’m doing this tomorrow.  It’s such a hard decision to make, because I desperately want to prove to them how dedicated I am, and that I can, despite my illness be a valuable asset to their team.  I also fear judgement, knowing that I’m in probation and they could just let me go… Out into the realms of unemployment, something I do not want at all.  I do not think they will do this.  Not without being given a chance anyway.  

It’s going to be challenging, but my life is challenging no matter what I do.  Once the pros and cons were weighed I knew I had to remain employed.

I don’t know how I’ll cope.  I’m sure I’ll go back to the days of, work, sleep, work, sleep, work… Whilst my body adjusts to its new demands.  I know it will be painful.  I know my Craig will have to make me more teas and get up earlier to help me bath and stuff.  I’m going to need to take more painkillers.  I know at least one and a half of my 2 days off will be slept away.

I’m gonna need ALL of my spoons.

  

So why do I bother?

Because of my self worth

My drive to feel useful and needed

My passion to embrace my own independence 

I get out of ‘these 4 walls’

I make new friends 

I learn new skills, so I feel like at least part of my brain is not willowing away in a foggy mess

I will have to drag myself kicking and screaming out of my bed in the morning, yes the AM! 

I will embrace days, whole days

I’ll feel like I’m living again

I will pay my bills, and not rely on welfare and be at the beck and call of our awful government.

I will not be wasting away, I might even get stronger physically.

Wish me luck (particularly for the early start!)

Oh…. We also move home this week.  Nothing like doing nothing for months and then all of a sudden changing your whole life in one week! 

  
Next week we are on holiday, so I’ll take some beautiful mountain pictures and we can all breath a sigh of relief and relax again!

Big hugs to you all, stay strong xx

Sage vs Night Sweats UPDATE

PART 2….

I have been using sage drops for over a week now and I have to say I am really impressed.  (Product link below)

Did it work then?

My scalp has had periods of dryness!  I was getting really worried about it as I had a spot on my head that I had scratched and the small wound was not healing at all due to the warmth and moisture, it was a breeding ground for bacteria, yuk!

Since putting 20 drops of sage tincture into a small glass of water 3 times a day on an empty stomach, I have seen a good improvement in my sweating.  I has not gone altogether, but on a few nights I have even woken up under a dry duvet, so I know something is working.

THANK YOU HEALTH SHOP MAN….

God love the health food shop man at Harvest Healthfoods in Ramsgate… I must send him a Christmas card!  I would jump on him if I had the energy and it wouldn’t see me arrested.  He recommended the sage to me after my GP searched patient.co.uk and came up with nothing.

If you are local, click here…  Harvest Health Foods in Ramsgate

So what now?

Well I will continue with the sage, to be honest I sometimes miss the middle dose.  I am so forgetful and 3 times a day doesn’t always work for me.  Of course I get better results this way, but twice a day will suffice.  I also invested in a really good chemical free roll on deodorant (one of the crystal ones).  Oh… and my trusty fan for the times the noise of the thing isn’t driving me mad.

I plan to buy some herbal sage teas too, to see if I get any results with them, and to experiment by putting sage in my nutriblasts.  (I love my nutribullet, finally I can eat veg without gagging!)

I still need to see a doctor as I am having some problems with the lymph nodes, particularly behind my ears (so painful), I need to get a GP on the case because the ME clinic has a waiting list of 1 year now.  I need my nodes checking for defs.

Love you guys….  If you have similar blogs, please link below I would love to read them!

Love Lis x

The drops I used are called Menosan and are available in health food stores (certainly in the UK) and on Amazon and probably a heap of other places.

***** Menosan drops on Amazon.co.uk *****

My Illness is NOT a Secret. But why should I explain it to you?

This is a photo of me… photo-shopped to make me grey and invisible, as that is how I am feeling right at this moment.  My illness is invisible, however I am not, and this seemingly gives people the right to ridicule me in public, it’s not fair and I want it to end.  Not just for me but everyone who goes through embarrassment like I did today.

I will not use my walking stick just because it provokes your compassion, I will not do anything to the detriment of my own independence, just so you can see my illness and not take the piss out of me.

You wanna know what happened?

OK.

Today, no less than 3 hours ago, I was in the Ramsgate Waitrose store very close to my home (that I traveled to, 1 stop by bus), getting a few bits for dinner this week.  I was having a particularly good day, and went without my walking stick, I knew I would be able to hold onto a trolley in the store, and this is always more helpful than the stick is anyway!  I felt good to get out of the house and mingle in the community a little bit.  I start work again soon, and I’m trying to build my tolerance/strength up.

I haven’t been able to carry a shopping basket for several years due to serious pain building up quickly in my arms.  They are not an option for me so I chose a shallow trolley.

I went to the meat aisle and placed four items into the trolley and went to the checkout, there was a small queue.  I felt ok, calm and relaxed, when the man in front turned, chuckling to himself and said “That’s a bit lazy isn’t it?”.

I looked at him, smiling, bemused…

He went on “Bit lazy isn’t it, all that trolley for those few things?!!”.

I just smiled and shrugged my shoulders.  He didn’t say a word more as he turned and tended to the 3 items he had carried to the checkout.

Normally I would gob off.  Do the… “Actually I have a disability, I can’t hold baskets, it hurts me, holding onto the trolley helps me walk”…. But I didn’t say this, I stood in silence.

Those few chuckled words had reduced me.

Made me feel inadequate.  That man shat all over my good day.

See it was only a few words that normally I could laugh off, explain, educate the misinformed gentleman about my plight and that of thousands others like me.

But in that moment, I was broken, reduced to silence.

I came home and cried.

See my illness really is invisible whilst you can see me.  You see me, Lis, the lady in her mid 30’s, who looks younger, wears eyeliner and modern clothing.  She’s standing in the line, getting shopping for her boyfriend because hes been hard at work and taking care of her for months with little thanks and she wanted to do something nice for him on this sunny Monday afternoon.  He came home to her anger and tears.

Please think next time you see a lazy person, like…

A teen boy in the disabled seat on the bus

A man who gets a taxi just 5 minutes walk down the road

A woman with 2 items in her trolley…

Maybe next time you see a ‘lazy’ person… keep your thoughts invisible too.  Chronic illness, learning disabilities, mental illnesses are very visible when you live with them.

Love Lis x