M.E

Chronic illness code for ‘I’m fine’

- TracyB Leave a comment

chronic illness code for 'I'm Fine'

One of the biggest downfalls of having chronic illness is that no one is really interested in how you actually are. The phrase ‘I’m fine’ is incredibly overused. So, I wanted to share the chronic illness code for ‘I’m fine’ and a few others that we would say, but actually tell you what that means.

Most of you will know by now I have ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome), Fibromyalgia                            ( widespread musculoskeletal pain) and more recently Joint Hypermobility in my hands and ankles. This is when when joints can dislocate and hyper extend easily.

I’ve had chronic illness and pain since 2009. Even with high levels of pain medications, including morphine, I still experience pain 24hrs a day, 7 days a week and 52 weeks of the year. In truth, I can’t remember of a time when I have been pain free in the last 8 years at least.. I read recently that the full list of symptoms of an ME or Fibro patient is the same as a patient with AIDS around 2 months before death. Just let that sink in.

The most frustrating thing about my condition is that it’s completely INVISIBLE. There is nothing to see, no bruising, no swelling of joints in my case, no identifying marks on the skin. Yet my body is wracked with pain daily. It also varies day by day which doesn’t help at all. In my case it’s generally at it’s worst in the winter.

I’ve also written about ways I can use heat to help with pain levels and trying to stay warm here as it’s just not possible to have your heating on 24hrs a day!

So, I wanted to share the chronic illness code for ‘I’m fine’ and some others but actually explain what we mean, to help you gauge how we feel on a particular day.

Read more

Staying in control of the housework with chronic illness

- TracyB 6 Comments

Staying in control of the housework with chronic illness

Staying in control of the housework with chronic illness

 

There is no denying the cleaning frenzy that has spread like wild fire online over the last few months. So I would like to say from the start this is NOT another jumping on the bandwagon post, but more of a recommendation of what I found has worked for me. First of all I would like to make it clear that I’m not judging any of these accounts or slating one because I like another. I’m firmly in the camp that there is enough room online for everyone doing  their own thing in the way that suits them. This is just a recommendation on how to stay in control of the housework with chronic illness that totally works for me in regards to my illness and pain levels.

I make no secret of the fact I have chronic illness which sees me deal with chronic, persistent pain daily. In fact I cannot remember the last day I was pain free. Not to be flippant but if I woke up pain free I would probably think I had died.

Anyway, before this HUGE cleaning frenzy craze took hold of everyone I literally stumbled upon an Instagram account that was less about just cleaning random things at any one time and more about a cleaning method that spanned over the week.  It’s been well thought out and covered the whole house on a weekly rotation while keeping to a minimal amount of time. Just 30 minutes a day in this case. The more I read the more I knew this method would work for me.

Read more

Top tips to keep warm in the winter with chronic illness and chronic pain

- TracyB Leave a comment

Top tips to keep warm in the winter with chronic illness and chronic pain

 

If you’re new to my blog, when I talk of chronic illness and chronic pain it’s because I am diagnosed with M/E/CFS, Fibromyalgia and Joint Hypermobility.  I’m now 10 years into living with these conditions. Over the years I’ve become a dab hand at being resourceful at ways to keep warm in the winter with my chronic illness. All without having to blast my heating 24 hours a day.

In very simple terms my illnesses mean I am constantly exhausted and I’m in pain ALL OF THE TIME! We may say we are ‘fine’ but internally our bodies are screaming. Check out our ‘I’m fine’ code here.

As our house has been extended our bedroom is in a Dorma loft. That would mean me having to heat a 3 storey house with only me in it, when my husband and son are at work.That just doesn’t make any financial sense to me to do that. Just call me Scrooge!

So I have become a bit creative with it all. And I wanted to share my top tips to keep warm in winter with chronic illness and chronic pain,

Top Tips on how to keep warm in winter with chronic illness and chronic pain

Read more

So, what’s next for Mrs B?

- TracyB 2 Comments

I’ve certainly been asking myself that for a while now. I’m a mum of 2 boys but they are now 20 and 17 (almost18), finding their own independence, as one is at uni and the other is at 6th form and also working a part time job. I have been married for 24 years and my hubby is a shift worker so that means I now spend the majority of my time alone! Due to my illness and chronic pain I’m no longer able to work a conventional job (I was a driving instructor), but I’m lucky that blogging and running social media accounts can be done in pj’s even on a bad day if necessary.

Yet when the boys where younger my life was busy (illness or not) with after school clubs, kids parties, meeting up with friends in the holidays etc, and although I am still officially a taxi service, a cook and a bank, my life is much more subdued. That in itself gives you time…………………..LOTS of time! Time to ponder and think about your own role in life. Yes I am still a wife and a mum but I am also ME. So, with 48 looming very quickly (and my hubby turning 50 last year!) I am starting to think about my time. How do I want to spend my time now my kids are off doing their own thing most of the time? Read more

Fibromyalgia pain management help on the horizon

- TracyB 1 Comment

Fibromyalgia pain management help on the horizon

 

Any of you that have been following me for a while will know that I have ME and Fibromyalgia, which in layman’s terms means I am permanently exhausted and have constant chronic pain. There are lots of other symptoms but the list is too long to mention.

I was diagnosed in 2009 and after being initially referred for a 12 week management program in London at the start my Borough decided they would not pay for me to go out of borough for treatment.  So, after being diagnosed  I was then left with no input apart from pain relief from my GP.

I spent years on Tramadol until my body totally adjusted and they were having absolutely no effect. Last year when the pain became to difficult to handle my GP switched me to Morphine (slow release) and Oramorph for breakthrough pain during the day. Again as my body adjusted they had less and less effect and the dosages where increased to a point where my GP could not authorise another increase without referring my to a Rheumatologist.

This was probably the best thing that could have happened. I had an appointment in February and she confirmed 18 tender points of Fibro around my body alongside all over body tenderness. That means my body feels bruised so wearing clothing/ shoes etc all hurts as though someone is pressing directly on a bruised piece of skin. From there she referred me to the Fibromyalgia clinic and I had that very long appointment yesterday. It takes all afternoon as you see three separate specialists in different areas who all work together to approach the illness from different angles.

Read more

The ALS Ice Bucket Challenge Rant….. For or against?

- TracyB 2 Comments

I will warn you now that this post will deteriorate into a rant and I cannot be held responsible for my language that may follow…………..

I have watched loads of these videos and laughed at the person being iced without ever having any intention of doing it myself. Then I watched a video that changed all that. This video is heartfelt and shows the reality and the fear that someone who cares for someone with this disease or has it themselves.

WATCH IT HERE

Read more

The trouble with………..

- TracyB 2 Comments

The trouble with………..

 

Long Term Illness

Is that from one day to the next you never know what it is going to throw at you! The last month has been unbelievably hard, my M.E symptoms have been flaring up.

The exhaustion I have had has left me in my pj’s most days until at least 3 or 4pm. The pain in my muscles has seen me put on new medication (that isn’t working) and generally feeling crap about everything including myself. I have found it difficult to be on here at all and have had no enthusiasm for it. But that is getting back to normal.

Mother’s Day with teens

Is that the presents change as I found out this year. I got my usual ‘little’ things that I love, mugs/ good coffee and other bits. But I also had a more unusual gift which looked initially like this

present ideas

present ideaspresent ideaspresent ideas

 

 

 

 

 

Are you getting the theme here?

But tucked inside was this……….a random Mother’s day potato! I’ve never laughed so much that I have at the randomness of this.

present ideas

 

 

The school holidays with teens

Is that they actually want to spend most of it in bed or in their rooms.

Now the late mornings I am not complaining about but the wasting of days I am. Gone are the days where I would have everyday planned out with them, activities, visiting, meeting with friends at the park etc.

Now they are teens, especially my eldest, he had some of his own things going on. He went out with friends to the cinema and bowling etc so a lot of the days were already planned. I do miss the old days but actually found this school holiday far more relaxing than previous ones. We did have the odd day out, Whitstable and Herne Bay -that sort of thing.

 

Whitstable
Me and my lovely boys!

 

We also had some great card game nights after my MIL taught my youngest a few new games when he stayed over for the night at their caravan.

So, there has been lots going on but I haven’t been that bothered about sharing it all until now.

I will get back into the flow of things and have missed reading all my regular blogs and my conversations on Twitter. But I have to admit the break has done me some good.

So will be churning a few more posts in the next few days about what has been going on around here like my eldest turning 16!

Now that’s another post

 

 

The Half Term Dilemma

- TracyB Leave a comment

As always in my house – nothing is ever done the easy way!

So half term was supposed to be a trip to my mum’s in Devon for me and the boys for most of the week as my OH was left at home working. By the end of the week just before half term the arrangements had altered to just me and my eldest visiting Devon.

My youngest did not have other arrangements, my OH had not taken the time off work………………so what changed?

Well, as always long story short, youngest was playing up all week and called me some totally unacceptable names, so I made the decision to leave him behind (not home alone obviously but at home with dad while he was there and then at his other nana’s when he was at work).

Not an easy decision though, but at the age of 13 I think I had to make the point that he cannot get away with the behaviour he had been sporting.

I have now been at my mums for two days so far and it has been a total chill out. No arguing, no complaining, no demanding and no ‘high maintenance’ attitude. It has been blissful. I have had no dinners to cook, no cleaning to do and generally no organising to consider. Like I said………..BLISS.

Me and my youngest son are VERY alike. We are headstrong, vocal and generally like to be in total control!! However, I think because we are so alike we had reached a stage where we both were in need of a break from each other.

In actual fact it has worked out great all round. He had a model to make for school which he spent 2 days with Dad working on it. He then gets to spend a day with his younger cousins at my MIL’s and then is going to help his Grandad sort his new IPod which he cannot use!! Therefore my son will get one to one time with him teaching him how to sort all his CD’s onto his IPod (that should make for interesting viewing). Then he will get another full day with Dad before we return.

In the meantime my eldest gets to chill out with my younger brother ( both get on like a house on fire) and I get to actually de stress from all the usual crap, drink copious amounts of tea, catch up with my mum and brother, and knit in peace until my heart is content.

Personally I think the break away from each other will do us both good, I have spoken to him and been in contact via text etc and already he seems in a better frame of mind. I think although it was hard to do I have done the right thing. I am hoping that he will think twice the next time he refers to my illness in such a derogatory manor!!

What would you have done? 

 

 

Energetix Magnetic Jewellery Review- M.E Related

- TracyB 4 Comments

THIS IS NOT A SPONSORED OR PAID POST

I like to pride myself on being good with money. I can make a small amount go quite far when it ids required. I can prioritise what is desperate and what I can leave for just that little bit longer. This includes making the food bill stretch, when necessary and paying all the necessary extras, such as the kids after school clubs and finding alternative ways to entertain the boys without spending a fortune!Anyway speaking to her for a little longer I was able to obtain a bracelet to try for review purposes. I was told I could wear it all the time except in the shower. As you can imagine after 4 years of constant muscular pain I would try anything……………..and I MEAN anything ( even if it meant running up my street nude………………ok that’s pushing it a little). She advised that I should try it for around 21 days and then see if I had noticed a difference.

So on went the bracelet and I waited. However, after 24hrs of wearing the bracelet I got the most horrendous migraine- NOT A GOOD START! So off came the bracelet and a day later I tried again……………and on came the migraine!! So for the second time I took the bracelet off and so far was NOT impressed. But I’m a trier if nothing else ( my OH says I’m very trying) so on went the bracelet for the 3rd time.

This time NO migraine!! Nothing at all, not a snifter of any pain in the head. A good sign I thought. Since then I have worn the bracelet ALL the time except when in the shower. So, over a month down the line have I noticed any difference?

Well to be brutally honest………….YES I think I have!!

This has sort of shocked me a little. I have had days where I haven’t needed to take my full quota of 8 Tramadol and Paracetamol cocktail. This is a good thing for me as I would love to come off all the pills altogether, so taking less, even on a few days, is a huge bonus!! Now with all alternative remedies not everyone will have the same results as what works for one does not always work for everyone.

 

This is the one she gave me to try – however the jewellery comes in all shapes and sizes!

She also had some helpful literature with her:

So how does it work I hear you cry? ( C’mon play the game people)

This is what the literature says:

How do magnets work?

Powerful Neodymium magnets worn near a pulse point stimulate the blood cells, therefore passing oxygen and nutrients around the body more efficiently in turn, releasing a natural anti-inflammatory, Cortisol, resulting in the alleviation of symptoms of many common ailments.

As a result, toxins are removed therefore reducing the chemical imbalance which is often the cause of discomfort

Like I said at the beginning this was not a commissioned post, it’s just a product that I came across and was able to have a try. For me I hope the bracelet continues to do what it is doing for me and only time will tell. But for a person who suffers relentless muscle pain any reduction of pain/ sickness/ medication can only be a good thing!

This is the link through to the lovely lady Nikki that I dealt with www.nikkip.energetix.tv

Lost in London…….aged 11 yrs!!!!

- TracyB 6 Comments

No not a story about me as the 11 yr old but my own son.

Monday saw us heading back up town for another audition (remember my youngest is a ‘luvvy’ at heart and wants to be an actor). Anyway this really is nothing out of the ordinary for us. A short notice call a few days before with address details (normally quite obscure tiny offices in London’s backstreets) so we headed off as normal.

Audition done and return journey in process until…………….

Yes we went to get on a tube when my son walked on and the doors closed!!!! Leaving me on the platform…………OK PANIC NOW.

So told screamed at the guard that my son was on his own only to realise the tube he got on was going in the wrong direction that we were going! CAN THIS GET ANY WORSE??

Again the guard seemed a bit too chilled for my liking when he said I should go to the operations room WTF????? No you take me there and bloody tell someone my 11yr old son is on the tube going in the wrong direction…….EXCUSE ME IS ANYONE LISTENING TO ME ( i’m the mad shouting, hysterical lady crying down the phone to her husband telling him she has lost her son!!!- I know not a pretty sight)

However, by the time we got to the operations room they then had to calm me down to tell me they had my son at the next station with the guard!!!! OMG OMG OMG

So went back down to platform and got on next tube, still bawling my eyes out ( what a bloody picture) with people looking at me as though I was a complete loon (understandable I think).

Turned up at the next station and burst into tears again as my son came up and gave me a huge hug!!!

He was calm, and I asked him what he did.

‘Well I thought I would get off at the next station and wait for you to come along. But a nice young man offered to get off at the station with me and tell the guard what had happened’ ( there are some nice people out there! but we still warned him afterwards of the dangers).

So 11 yr old is calm, and 41 yr old mum is a complete wreck?????

He told me that he wasn’t panicked but he was worried about me because he knew I would be having a meltdown- talk about role reversal!

Anyway, all’s well that ends well and all that. For me I don’t think I have ever been so stressed in all my life. My M.E is affected considerably with stress and for the last few days I have been unable to do anything or eat properly so I know that is definitely the fallout from Monday!

However, everything happens for a reason and now we have at least got a contingency plan- if separated go to the next station and the other will follow!!