Fear of the Unknown

Good Morning Bleeps.

I don't often admit it but I think today I will be really honest. I am not saying I usually lie, I just sometimes hold some stuff back. I guess that is a defence mechanism isn't it? If you say something out loud then it is true - it is out there and you have to own it.

Today I think I need to own it. I am scared. Really, truly scared.

My legs hurt so bad at the moment, it is a struggle to walk. I lay in bed at night watching TV to take my mind off of what is happening in my body. I can't sleep, insomnia tortures me night after night. How can your legs feel like they have iced water flowing through them instead of blood and yet your skin is on fire, like someone is pouring boiling water over them? Nerves are a bastard! Anyone who has ever said (usually Doctors) that MS is not painful is off their flipping trolley.

My eye has been twitching non stop now for days. It is a visible twitch, unlike the others in my body so I take small comfort in knowing that other people can see it, that I am not imagining it or going bonkers. It's constantly there, reminding me that something is going on inside of my body that I have no control over.

I am a control freak - this does not sit well with me.

I have my new business - I want to throw my whole self at that. No, correction, I NEED to throw my whole self into it. The "what if" MonSter is there though, in my mind, taunting me all of the time.

"What if this gets worse?"

"What if I can't work?"

"What if, what if, what bloody if?"



I am the "I'm fine" girl but I have to be honest I am really struggling to deal with the symptoms as well as the anger and resentment that goes along with it. I don't really do self pity. I remember realising it was time to stop being a counsellor when a client asked "why me" and I felt like snapping back "why not you?"

I feel like that now. Why me? In truth though, I was right with my client - why not me? There are other people much worse off, I know this in my logical mind. It is just hard today to not think of the people that are BETTER off and feeling envious of their good health. I just saw an advert for the "race for life" - the charity to raise money for cancer. I used to run. USED TO. Now it hurts to walk and I feel so sad and alone. I am not alone, I have my family and many, MANY friends. A lot of them have their own health struggles - they know how I feel and that gives  me some comfort but ultimately we ARE alone in our own bodies with our own symptoms.

I felt like I needed to blog today, to put these feelings down in the hopes it would make me feel better but all it is doing it making me feel like a moany, miserable bitch so I will stop now.

I will chalk today up as a bad day, retreat in to my cave and wait for it to pass. It will pass. I have faith in that much at least.

So enough about me, how are YOU?

MS does mean Miss Sexy After All!!

Good Morning Bleeps.

It's been a while eh?! I haven't done an MS blog for such a long time so before I go on I will recap.

I was diagnosed in Dec 2011 with MS based on an MRI and symptoms. I was then referred back the NHS where my current official diagnosis is PMSBNDGAS (Probable MS but no Doctor gives a shit).

I last saw my Neuro on April 12th. Yes, April 12th of 2012, I went through MRI's, CT scans, blood work etc and waited oh so patiently for my follow up appointment. Now, I am not one to scream or make a scene so I didn't chase.

I did call my Neuro's secretary twice last year. The first time was when the appointment for the MRI came through and I noticed it wasn't including the contrast dye as I had discussed with my Doctor. She said she would check with him and call me back. I said please do as my appointment was just a few days away and I needed that amended. No return call. When I called back there was a machine, it was her day off and I could leave a message. The test was the next day. Thankfully I got through to radiology and the very helpful lady on the phone spoke to the Radiologist and HE authorised the contrast dye.

I went through last summer, dealt with the twitches and spasms when I got too hot and my symptoms were up and down. They flared quite badly near the end of the year (from memory around Oct/Nov but as anyone with MS with tell you - brain fog and bad memory are sort of part of the deal so dont hold me to it). I told her I was suffering and would like an appointment, that I had been very patient (I would say 6 months is patient, wouldn't you?!) and her response was that my Neuro was FULL for the rest of the year since he was the attending Neuro on call at the hospital, he was only running one clinic a week.

I asked her what I should do? Should I go back to my "oh so helpful" GP and get referred to someone else? Her reply was that would take longer and so she would talk to my Neuro and see if he could add me on the end of one of his clinics. I was told she would call me back. Shall we start taking bets here on if she did or didn't?

Of course she bloody didn't. I am very much alone with my symptoms. Like I said PMSBNGAS!!!

So, what is a girl to do? I can carry on banging my head against a wall, trying to fight a system and Doctors who either have too many patients or simply don't care (after all, it isn't their life that suffers every single day is it?) OR I can decide to just get on with it. I have decided the latter.

Anyway, at the end of last year I decided that I wasn't going to give any more of my life to this bloody illness. Nope, I was going to revive my photography business.

I had been an on location Portrait photographer for 15 years specialising in Maternity and Baby work but I had to put it on hold and turn clients away when I got sick because I didn't know from day to day if I would be able to physically cope with the demands of lugging equipment or driving to locations (most in London) but an experience at the end of 2012 inspired me to go for something new - a new dream.

I had some photos done for my other half as a gift. I had spent so much of last year feeling like a walking illness that I wanted to feel good about myself again - to feel pretty. I liked some of the photos but the experience wasn't as I had hoped, you can read more about that here if you want to.

So I decided that I was taking my life back - 2013 was going to belong to ME and not my symptoms  No more sitting on the sofa, crying in my PJ's. Nope, not this girl.  I was going to open my very own studio in my home town. That way I didn't have to worry about the driving or setting up equipment at every shoot. It seemed to make sense. I cashed in the whole of my savings (my nest egg/retirement fund) and am now working so very hard to make my new business "Oh La La Boudoir" a success.

What has happened since has amazed me and warmed my heart. I have had so many women through my door and ALL of them have a story. Young girls who hate their bodies because they don't fit into the size zero category, size zero girls who wish they had curves, a lady who lost her soul mate last year and decided to do this for herself, to live life to the full as you never know. A couple of ladies with MS have even had sessions and it has boosted their confidence so much (such as the lovely Fiona, shown here).

Fiona and I became friends when she read my blog, we both went through tests at the same time and she has since had her official MS diagnosis. She has been such a tower of strength to me over the last year and I felt blessed to show her how beautiful she is, it was an amazing day that I will cherish forever.

Sometimes you can lose yourself a little when you live with a chronic illness, it is like it becomes who you are. It isn't. You may have MS but it doesn't have to have YOU. I wake up every day and have symptoms of some kind. As I sit here (in my shiny new studio) speaking to you today I have a numb left leg, double vision, black spots, numb face on the left and a twitchy eye (ooooo sexy eh?!) but I am not going to let it drag me down. I am not going to let this bloody thing take one more day of my life because tomorrow is not guaranteed.


More of my work:

So, enough about me, how are YOU?