When Fibromyalgia is actually Lyme Disease

Exhausted Mums

I’m sorry, it has all been a little bit about sickness recently hasn’t it?  Bit boring really, so I’m going to make this post succinct, and then move onto more interesting subjects for a while 😉

Some background: since June last year, I got really sick.  I’m better, but I can’t work full time, find it difficult standing up and haven’t regained my stamina or my cognitive ability.  I am managing to juggle the mum-kids thing better and the CBD oil is a big help.  But I am very up and down, and the only solution seems to be lying flat.  The girls at Espiritu are getting stronger and stronger, and taking more and more work off me; I’m very lucky.

I felt there was more to it than ‘stress’, I felt ‘wrong’ inside, and eventually shouted enough to get referred to a Rheumatologist.  I was really excited – someone who would actually know about Fibro etc and be able to help!   Hmmmm.  Not so much.  I saw her in November after waiting 5 months.  She was really grumpy that a Dr had dared to diagnose me without a specialists help, told me I didn’t have Fibromyalgia, did some auto-immune tests, and said if they came back clear then she didn’t want to see me again.

I don’t agree with her – my initial symptoms for the 4yrs previously were very Fibro, and I’m grateful I had a Dr who was aware of what they meant.

I do agree with her that the new symptoms weren’t – and actually I’d made the mistake of seeing a different Dr (you know how difficult it is to get appointments), who wouldn’t listen to me about that.  The good news was she referred me to a neurologist (I’m still waiting) and a physio (I’m still waiting).

I was very upset and down about it.  Why do we hope for help from the medical system so much, when we know how limited they can be as well?

I had been googling my new symptoms over and over.  Over and over one thing came up: Lyme Disease.  I was hoping that I was just jumping on the bandwagon – you know how we see an advert on the TV about stomach pains and immediately worry that we have cancer?  That’s what I was hoping.

Eventually I pulled myself together and went back to see my ‘right’ Dr rather than the first appointment available.  I felt silly.  But went through my symptoms with him again and asked if he thought that I might have something different.  Much to my surprise he agreed and said he wanted to do some research and would call me.  The call came with a recommendation to read Dr Horowitz’s book ‘Why can’t I get better’ (Warning: it’s a LONG, complicated book).

I filled out the questionnaire and was worried to find that I came out strongly as Lyme.  Then when I had a flare next I went back to the Dr, who was unusually down.  He confirmed that I have a ‘clinical diagnosis’ of Lyme – i.e. from my symptoms.  I’ve had the blood tests – they don’t point to any other weird illnesses.  They also don’t show positive for Lyme, but that’s a whole other story and political mess as ‘google says’ that they only work 20-50% of the time.

Bless him, I felt sorry for him – there isn’t anything he can do.  The NHS doesn’t officially recognise chronic Lyme, even though people die from it.  The official treatment is 2 weeks of antibiotics (I had 4 before Christmas and felt amazing, but the bleugh returned as soon as I came off).  The ‘Dr risks getting struck off’ treatment is 2yrs of double antibiotics, some intravenously.  I can’t afford the german blood tests that would prove I have Lyme (which the NHS would still ignore), or the £60k to be treated in Texas.  I didn’t have any ideas on what to do because the alternative options are so overwhelming, confusing and complicated.

Progress

But there is some good news.  It looks like Mr Taxman owes me some money, yay!  So I saw a Naturopath this week, who does know what to do.  I’m going to spend my money on her, rather than blood tests, as I’m more interested in getting better than proving to people who still think I’m stressed or need to ‘just get up and keep on going’ like they do.

I’m crossing fingers that you’ll see a much more positive post in about 6 months time.  When I get my head around understanding Lyme, I’ll write up about it too.

But for now, I think we’ll move onto more interesting subjects shall we?

CBD oil for Pain Relief & Sleep Problems

CBDoil Fibromyalgia

I apologise, I’ve been promising this post for months, and really it’s pretty easy to write, I just didn’t get round to it.

If you have a weird funky illness that gives you pain and sleep problems, the I really recommend CBD oil made from Cannabis oil.

There is no ‘hit’. Just pain relief and a good 6hrs sleep, sometimes more. Potentially a slight anxiety reduction as well.

I buy mine from CBD Brothers (The white label cheaper version). Now I’ve been told that lots of CBD oil sold online is from Hemp oil. I can’t be sure, but the results are great . . . → Read More: CBD oil for Pain Relief & Sleep Problems

Why my body suddenly crashes

Target

This is how my body works …..

“Right then, we have a target, all hands on deck we have a target”

“We estimate that this project will take <xyz> amount of energy over <abc> number of days: initiate gradual send out of energy per day”

“Oh shit, we estimated wrong”

“Initiate borrow of energy from ‘Bank of Energy’ to reach end of target”

“Yay target reached!”

“Warning, warning, insufficient energy creation ability to pay back energy debt, the bank is pulling the plug”

“Warning, warning, the plug is being pulled, the plug is being pulled”

 

Cue my body literally feeling like someone . . . → Read More: Why my body suddenly crashes

The face of silent illnesses

This is the face of illness ……

 

It doesn’t look particularly ill does it?

Honestly I don’t mind. If I looked like I felt, it would be pretty catastrophic, and at least I don’t have that to worry about. I don’t need lots of sympathy all the time either. Although, I suppose it might be a helpful reminder to people that I’m not up to scratch.

I also have a big habit of ‘putting a good face on’ – one of my weaknesses/strengths who knows!

To those who know me well, there are dark rings under my eyes, a slight tightness to . . . → Read More: The face of silent illnesses

How to invest in yourself!

So back at Radio Verulam today with the Gorgeous Danny Smith and I was inspired to chat about ‘investments’ by Curly Headed Boy.

It’s spring time, maybe you need a fresh look at your life and a bit of an overhaul?

The question is how to invest in yourself?

Money Saving.

Money

We are quite strict that even from pocket money, our kids have to put something aside. It’s just so that it becomes second nature to them and eventually when they start to earn money, they naturally expect to be putting a minimum of 10% away. Otherwise, his head will be automatically . . . → Read More: How to invest in yourself!

How, why and what on earth is ‘Loving yourself’?

Is it possible to have romance and kids?

I was on the radio tonight with the ‘Gorgeous Danny Smith’ on his Drivetime show on Radio Verulam (you can listen again for a week here – monday 5.30-6pm), talking about ‘Self Love’. It’s a bit cliched maybe, but also really important, and something I’ve been thinking about and wishing a few of my friends would practice more this month. Why Bother?

A hug

First off, I need to explain to you why it is so important to you and to the ones you care for, and your success that you love yourself. 1) Healthy relationships – when you don’t love . . . → Read More: How, why and what on earth is ‘Loving yourself’?

New Life Resolutions

By now most of you guys will have started and stopped your New Year Resolutions. Never fear; that’s perfectly normal!

January is a time for reflection. March and September are the time for new resolutions.

But I was thinking after seeing a funny YouTube video, getting a bit down about the state of the world, and after a team meeting at Espiritu, what 3 resolutions would make the biggest difference to this world of ours or more importantly mine 😉

So I thought I’d chat about it with the ‘Gorgeous Danny Smith’ on his Drivetime show on Radio Verulam this month. (You can . . . → Read More: New Life Resolutions

Why Pampering Is The Best Present You Can Give

Pampering – it’s one of the best presents you can give YOURSELF or your loved ones!

It might sound a bit ridiculous for the owner of a Hair & Beauty Salon and Spa to say this: But I hadn’t understand HOW important it is until recently.

Now Danny Smith at Radio Verulam is a big fan of a pamper, so I thought I’d chat with him about it, about how under-estimated it is. People think of it as a treat – whereas, I’m beginning to understand that it’s essential.

If you missed us, you can listen again for a . . . → Read More: Why Pampering Is The Best Present You Can Give

What to do if your job or business don’t seem to be doing well?

Fur Monster

So I’m back with the gorgeous Danny Smith on Radio Verulam – thank goodness he keeps asking me in, otherwise I’d never get around to blogging.

Check out all my previous posts in the run up to Christmas if you need tips on what to buy, how to afford it or how to deal with the stress of it.

This time I thought I’d look at a slightly different side to Christmas; the stress of someone in a job that isn’t going well, or a business that needs a big improvement, especially when you know that ‘Christmas is coming’, along with a pile . . . → Read More: What to do if your job or business don’t seem to be doing well?

Top Tips For Getting A Job Or Keeping A Job

Look at things

Last month I chatted through top tips for starting a business or finding a business, so this month the the gorgeous Danny Smith on Radio Verulam I thought I’d talk through jobs for those that I put off starting a business 😉 I know that with Christmas coming up there will be lots of job opportunities, and then afterwards, some lucky people will get the chance to stay, so I thought that tips put together from 13 years of working in IT, 15 years as a therapist and a year as an employer might help!

(Please do let me know if they help – I’d . . . → Read More: Top Tips For Getting A Job Or Keeping A Job