Here’s What I face.

I have spent the majority of my life thinking I have to explain and justify myself to people, like I need to? I don’t. The only person who needs to feel okay with me is ME. Well, here is what ‘me’ faces.

I face the uncertainty of life. I face living each day and enjoying it for what it is, because tomorrow, I might be in pain, uncontrollable horrendous pain. As much a living each day goes, I am starting to do better. The only thing that needs to stay the same is my own little medicated routine.

Except every day is not the same. Tomorrow I might be awake at 8am but the next day 11am, so I have to adapt and my meds need to be adaptable.

The anti-depressants I have come to rely on, are easy, along with my gabapentin. I do them when I get up or when I remember, there is no time scale. But my Copaxone, well that needs the right time each day. I needs commitment (like a really aggressive bunny boiler)

I just cannot seem to give it the commitment it needs. I feel like I am bloody starting to fear it. 

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It really is no fun and I am starting to hate it. Just can’t seem to find the want to put it into my life, no matter how many people go on at me.

Dark, Down And Disorientated.

Midweek and it seems like my uplifted days are slowly coming to an end. I am starting to feel down again, not something I really wanted to feel again for a while. 

After a rather strange week so far, I am tired and a little “meh”

Have not really got much interest for anything, not housework, shopping or playing with the girls.

I know, hideous.

Some might think its a wonderful idea to take a plethora of vitamins and go for a run, well to you I say, GET LOST! Before telling me how to live, see how it really feels before you throw some vitamin-exorcisey bollocks at me. 

Right now I want to cry and feel sorry for myself, on the sofa, in my own home. Because I can. 

Have been feeling average MS wise for a few weeks, which for someone like me, is good, I swear. Now I am starting to tire of doing things and all I want to do is watch TV and drink tea.

Not much has changed for these feelings to arise, apart from being busy and stressed, so I am starting to wonder if my Copaxone has anything to do with it, I am giving it the benefit of the doubt before I decide to stop.

Its only been a few weeks so I will soldier on, with the nasty lumps and vile stinging.

However I will admit that stopping treatments altogether has crossed my mind. Its something I have been secretly discussing with my nurse, I have asked all the questions and I have all the facts, so I will take my time and make an informed choice.

After all, its my body and my life and part of me is tired already of pumping myself full of drugs on a daily basis. Its depressing-er. 

So lovely people, until tomorrow!

Ergh, Is It Bedtime Yet?!

I. Am. Tired.

Not because I have been busy, no that would be easy. I am tired because I am full of drugs.

Today was day three of Copaxone, I am not going to keep count forever, I am sure the numbers will fall into the abyss somewhere down the line. But right now, its all new to me.

Today was the tum on my “bum fat” by this I mean love handles, but its joined to my bum so they call it bum fat.

It hurt, no, wait, it burned. 

Yup, Copaxone is a pretty owchy injection, the stabbing bit, I don’t really feel, its the after burn, that’s the real bitch.

Right now I feel quick sicky, got that horrible gaggy feeling at the back of my throat.

Yum.

I didn’t think injecting myself would feel this “okay” but I am really not fussed by the whole injecting thing, its the after bit I dislike.

My memory has been horrific. I actually forgot I had arranged to meet a friend yesterday, not like the “ow shit I am late” kind of forgot, I mean the realising at bedtime type of forgotten.

I am dreading texting her, like she’s gonna believe someone could be that dim?

Well, I am, I am a total knobhead. 

Had a catch up with my journalist yesterday (I forgot that too, it was her email telling me she was running late that prompted me to remember) She thought I was “dealing with it better” 

Yes, yes I am.

Has nothing to do with the mondo dose of anti-ds I take on a daily basis.

How do you explain that to someone you barely know?! :/

I Have Made My Choice

So today I made my final choice on my whole treatment thing, when I say final I mean for now, obviously.

I needed to think of everything, the kids, hubby and myself. I having been going back and forth for ages, with the endless what ifs. Now I have finally made up my mind.

I am going to stop my Tysabri infusions and start on the daily injections, copaxone. 

Now for anyone with MS, they will think I am mad, I have been offered steak and I am taking burger. I am trading in my posh car for an average banger. However factoring in every part of my life and every emotion I have has brought me to this.

I need a break from hospitals, Tysabri needs someone who can commit (wow it took me ages to find that word in my messed up brain) I am not ready. I know I will have to face it daily, however it comes with so many less appointments and check ups, it will give me time to deal with myself, to get into the right mindset for tysabri. An option which I will always have. 

I am not saying never for this incredible drug, its simply just not the right time.

I can stay at home with the girls and I can start to try and move on with the MS, I can find the real strength to fight.

My mind is mush and I need to put myself back together. 

One amazing lady told me ‘its called the present because every day is a gift’ Now I am not soppy, however these words have stuck with me.

So, please feel free to join in this next chapter.