Music Therapy

I have learnt a lot of distraction techniques while dealing with chronic illness but it has only just occurred to me that listening to my favourite songs on the radio or MTV is the easiest no effort way of losing myself.  So here is my tip to you......Surrender to the music!!  When something is bothering or upsetting you, you can't sleep, feel ill or depressed....  Turn up the volume and sing your heart out!!  It really works!! :)).  If you have the energy try dancing too!

It doesn't matter what sort of music you are into, if it makes you happy it will do the trick!  It's all about living in the moment...mindfulness! You become absorbed in the words and theme of the song without even realising.  For those few minutes the song lasts you are living someone else's story and you can be whoever you want to be!  Almost like role play, and we all know how much fun that can be ;))..  Seriously though, think about it...what tunes make you smile??  For me it can be anything romantic, with a fairytale ending or something empowering because they remind me of a simpler time and help me be the best me I can be and remind me that it really doesn't matter.

So, when my legs don't work like they used to before, and he can't sweep me off my feet, I know Ed Sheeran will love me until I'm 70!  now that's what is important!!

Chemical free living...an experiment in clean living for health

OK,  so with three members of our family having health concerns and recently going organic for food I have been reading about how environmental toxins and chemicals can affect your health so have decided to clear out the kitchen and bathroom cupboards and make changes!

First, we use a lot of bleach and antibacterial washes in this house (well I do) and It always worries me how much of this is getting onto the children's skin. My Daughter suffers from very dry cracked skin (so do I) and she is only four years old.  I immediately changed all our hand wash to EPA, Silicon and Paraben free. It is early days but I am seeing an improvement to mine already.

Next was the spray bleaches, dettols and toilet ducks....they are now distilled vinegar with some drops of lemon juice and essential oils. I am currently experimenting with lavender and tea tree oil.  Essential oils are anti fungal, antibacterial and antibiotic! No need for harsh chemicals to kill those bugs after all!!

Toiletries.  I thought I would have a hard time convincing my Husband to ditch his regular face wash, shave gel and toothpaste but so far he has been open to trying the lovely products I came home with from my recent shopping trip!  I found a limited range of chemical free items in my local Boots, Superdrug and Savers so I ended up buying everything from my local Revital health food shop.  I bought a lovely strawberry flavoured toothpaste for the children, fluoride free, which they love.  The peppermint and aloe Vera adults version has not gone down so well with Hubby as he didn't like the taste so he has gone back to his Macleans for now. I spent a small fortune on some shampoo and body wash from A'Kin which we all love so that's fab.  Today I bought some travel bottles so I can divide them for use around the house and taking to the gym etc.  I will be cross if they only last a month as they were rather pricey, so some watering down will be happening!!

All in all I am happy with my purchases although I am still new to this and learning as I go. I feel very positive about making these changes as they can only be good for us.  Check back in a future post to see how much of an impact this change has had on our family! :))

Let down again....another ignorant Rheumatologist

Well as the title says I am still no closer to a definitive diagnosis due to the ignorance of many Rheumatologists.  I have seen five Rheumys now at three different hospitals, all of whom suspected autoimmune disease under the heading mixed connective tissue disease but because of negative inconclusive bloodwork will not diagnose me. I am fed up.  I wanted to see a consultant who is known to diagnose seronegative lupus/mctd because with all my symptoms I believed he would understand immediately.  Unfortunately his hospital assigned me to another guy who really was quite patronising to be honest! How hard is it to find someone who knows what they are talking about?? Very apparently! 

Yes I am complicated but so are many other people and they get their diagnosis!  I have been in pain every single day for over five years now and I am still fighting for a correct diagnosis!  Ask anyone with chronic illnesses and they will tell you they go through a roller coaster of emotions frequently and you can have some very dark thoughts at times. You feel so alone and isolated and when you struggle to get a diagnosis it makes it worse because you feel nobody believes you.  This is something I hear frequently from patients on support forums and makes me so sad. We do not want to be ill.  I do not want to be ill but have come to accept that is my reality.  I just want to find a treatment that works to improve my quality of life. I do not want to be on meds every day for the rest of my life never really knowing what they are doing to my insides, but if that is what it takes to feel slightly more normal and maybe in slightly less pain every day so I can get on with things like taking my kids to the park without feeling like I am going to collapse with exhaustion then that is what I will do.

Over the years I have tried many different meds with varying results.  Rheumy number three put me on anti-tnf injections which helped somewhat and Rheumy number four put me on Hydroxychloroquine which helped even more.  If I don't have an autoimmune disease as they keep trying to tell me, how can these drugs be so effective?? I know my own body and will continue to fight for recognition. 

Now....which Rheumy to try next?? 

My journey so far

Ok, so I probably should have started doing this a long time ago but I have been busy reading endless medical journals, health forums and social networking disease pages in an endless quest for answers..

I have been in pain for five years and four months now. It has become 'the norm' for me and I honestly do not know what it is like to not have pain somewhere in my body every single day. Despite this I remain positive and live an active life with my Husband and two children. I am not religious but I hope and pray with all my heart that my kids do not ever have to go through what I have been and still will go through for the rest of my life.

It all started when I was pregnant with my first child.  Very early in my pregnancy I started experiencing joint pain in my pelvis, in what I have since learned is my sacro iliac joint (SI).
My GP told me it was pregnancy SPD and not to worry since it will disappear when I have given birth. Well a bit of pain turned into excruciating radiating pain that every time I tried to walk stopped me in my tracks. Since I was pregnant I was not allowed to take strong pain relief or anti inflammatories but when I ended up going to hospital in an ambulance one day when I couldn't make it back to my desk from the toilet because the pain had literally seized up my pelvis they gave in and let me leave with codeine.  I was to take this as needed only when I was absolutely desperate.  I left on crutches and as my pregnancy progressed and I got heavier the strain on the joint got worse and I had more painful than pain free days.  Finding something that helps take the edge off can be a challenge, but more about that in another post...

That nine months felt like it lasted forever and because of this I did not enjoy being pregnant. I would love to tell you that when I gave birth at 37+1 weeks that it all disappeared....sadly this was not the case.  It did improve however.  I put this down to the massive immediate weight loss of giving birth.
My GP reiterated that it will go away I just need to wait until all the pregnancy hormones are out of my system.... Anything up to six months!!

Within those first six months I started to get very stiff when I woke up in the mornings. It took a couple of hours before I could move around freely and bending and stretching became very painful. I found I had painful areas down my spine and it felt like a rod had been taped across my back.  The codeine was becoming less helpful as the areas of pain increased and I started to get really worried. The list of symptoms started to grow and now included debilitating fatigue, muscle weakness, frequent headaches and sinus infections, inability to regulate body temperature, raynauds, digestive issues, dry eyes, mouth and vagina, painful sex, facial rash, photosensitivity, mouth ulcers, hand cramps, plantar fasciitis, enthesitis in ribs.  I would wake up many times a night in pain. Top count was eleven times turning over because of the pain in my ribs and hips.
Like most people I turned to the Internet to find out what was going on and how I could help myself.
I decided I was going to be sensible and not scare myself by thinking I had every disease that came up when I 'googled' my symptoms.  It turns out that my specific symptoms, the stiffness particularly come up in less than a handful of illnesses.  That made it so much easier to pinpoint what was wrong with me.  The next step was convincing my doctors.  I worked out I have an autoimmune disease. At first I thought Ankylosing Spondylitis but now I believe it to be Lupus and Sjogrens, the problem is many of them are not easy to diagnose especially in the early stages. Blood tests can be inconclusive and do not always match the symptoms.  I also have fibromyalgia which complicates things as many doctors cannot see past this.

Soon I was pregnant again and as my baby grew it became harder for me to walk and I had to use my crutches for most of my pregnancy. My doctors, physics and consultants would not commit to a diagnosis or treatment plan. I learned by experience that this is the norm when it comes to healthcare professionals but if you want to know more about my feelings on this matter I will have to start a new post! ....I have a lot to say! :) ..  My fight for answers continues...