Progress

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 ūüėČ

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 FibromyalgiaI 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 and they assure everyone that it’s from Cannabis oil.

I’m not fixed. ¬†But I’m functioning, and I’m sure it’s the oil that’s doing it. ¬†I’ve been taking it since September and I get through a bottle about once every 5 weeks.

I have better sleep than I’ve had in years, without any other supplements/herbs (I used to have a huge selection). ¬†I take it 1-2hrs before sleep (it can have a stimulating effect if taken too close to bed time). (I drop under my tongue, held there for about 3 mins).

Then I take it in the morning and I can feel the pain relief within about 10mins. ¬†The couple of times that I’ve forgotten to take it, have really proved how much it reduces my pain levels.

I also have the balm, which I can apply straight to any shooting pains or chronic pain that I get – this is amazing, because those sorts of pains would normally cause me problems for days (shooting pains in my head or arms in particular). ¬†I’ve only bought one lot of the balm and it still has loads left.

How does it work? ¬†Put very simply the theory goes that the CBD oil helps the existing Cannaboid cells in our body that are struggling to get rid of all the nasty stuff (technical term!), as they are¬†already overloaded with Pollution and rubbish diets. ¬†So it’s helping the body to help itself.

What can it work for? ¬†I think anything that is brain or stomach based (where there happen to be lots of these Cannaboid cells. ¬†It’s is suggested that it can therefore help Fibromyalgia, M.E. CFS, Epilepsy, Parkinson’s, Cancer etc. ¬†Although I have a friend who is a nurse, who has found that some epileptic children who tried it had fevers and sickness (I don’t know where that CBD oil came from) – so as with all things it may not work for everyone.

I don’t know if it can help you, but I think it’s worth trying if you are struggling. ¬†Please let me know in the comments how it goes.
*Gentle hugs*

Exhaustion …. What it feels like

I’m writing this for three reasons. ¬†(Well, I actually started writing it 14 days ago, but have been that exhausted that it has taken this long to finish!).

  • Firstly to share with non mums what it feels like. ¬†I’m sorry to do the whole ‘you can’t understand what its like’ card, but seriously, I reckon that only Mums or people who have illnesses or who work shifts, can really understand the true meaning of ‘exhaustion’!
  • Secondly so that other mums know it is not just them.
  • And finally to remind me when these days are over, that my body really is too old to get broody again!

It starts with overwhelming sleepiness. I like the feeling of this stage as for years I was a rubbish sleeper. My eyelids get heavy, blinking takes twice as long, and it takes a huge effort to reopen my eyes. Suddenly I find myself asleep on whinnie the pooh. Max (4.5yrs) will either be shaking me awake or kindly putting a blanket over me, depending on his mood. But in a couple of months time this type if tiredness will be potentially dangerous when little Willow starts to crawl; there are stairs, small toys, so many potential problems. I remember waking up oneday with a start to find myself asleep on the floor and max nose to nose with one of our old dogs, who just woken up was trying to work out if max was a dog (who could be bitten) or a child. (We sadly found him a safer home very shortly after, which was extremely heartbreaking to do, but he was worried, let alone us).

Soon sleep becomes more difficult though as the worst stage kicks in. Your head hurts, there’s a dull ache constantly behind the eyes, your stomach feels like a washing machine, and all I want to eat is chocolate. After days of sleep torture, where you are dragged out of a heavy collapse several times, I then find myself incapable of getting back to sleep, which is just the worst kind of torture ever. The brain gets noisy and I get GRUMPY!

When we are grumpy, the ability to be nice to people, give them the benefit of the doubt, have endless patience with the children and be fun rather than shout, disappears in a puff of smoke. But no one appears to be willing to understand or let you be grumpy, or not as grumpy for as long as I’d like anyway! Expectations are high, children are disappointed, husbands snap back and ‘normal’ people either think you are stupid or a cow. ¬†I suspect this is where many of the arguments in the blogosphere/twittersphere/facebooksphere originate from.

Soon perspective goes. That’s when there are tears hiding behind my eyes constantly all day long, and all I can see is an interminable long haul ahead with no hope of rescue. And frankly I’ve been tempted to throw both kids out of the window. ¬†I hate the crying bit. ¬†I hate the pathetic bit. ¬†When I’m out of it, I can see how useful it can be (I’ll post about that in a few days, as I’m on my way out, cross fingers). ¬†But when I’m in it, it feels like big dark sticky goo.

So don’t feel sorry for me, or be put off having kids, because it isn’t every day or forever, and I wouldn’t change a thing. ¬†It’s not their fault that tonsilitus in one (mega puke city!), inevitably is passed to the other, and then other things go wrong like child-care etc. ¬†But when you see a mum parking really badly or slowly, be patient. ¬†She may very well be stupid, but she may also be operating on minimum brain cells due to the exhaustion. ¬†Remember, it’s one of the most effective forms of torture, and lack of sleep can kill you! ¬†When she snaps at you, hold your tongue and give her a hug instead. Most of all, have realistic expectations on what she can achieve and tell her how fabulous she is for managing it. ¬†Finally remember, ‘this too shall pass’ (one of my mates favourite sayings, you know who you are SB!), and normal service will resume very soon, with a much cheerier version of me/your wife/mum/friend/workmate/neighbour.

To be continued …. Tips for picking up the pieces when exhausted.