Feeling Bare

For the first time in around 7 months I am feeling bare. Blank, achey and full of the symptoms I worked so hard to get rid of.

A relapse.

A word you associate with alcoholics or drugs users, but one that is used to widely in the medical world.

 re·lapsed, re·laps·ing, re·laps·es

1. To fall or slide back into a former state.
2. To regress after partial recovery from illness.
3. To slip back into bad ways; backslide.
A falling back into a former state, especially after apparent improvement.

The perfect term to describe the pain. 

Today I visited my neurologist, I needed his okay for steroids to speed up the recovery cycle for this relapse. My Neuro is one of the nicest medical professionals I know, bar my MS nurse and Hannah from the hospital. He always knows what to say and completely understands this illness. He knows my request for “sleep” means “please medicate me so I can sleep” 

A harsh reality of MS is that we cannot be cured, but we can have access to some amazing substances to help us manage. I don’t believe humming a lot and eating organically will ‘cure’ me or anyone with MS. I believe in managing my symptoms and taking the necessary drugs to ease the pain, the lack of sleep and relentless depression.

People often forget, its going on below the surface. You might think you are ‘cured’ but in reality, an MRI scan could reveal an entirely different story.

Anyhow, Monday sees the IV team coming to the house so I can have my three day IV steroids.

Monday I treat my first relapse in 7 months. I am gutted it happened as I was doing so well. But at the same time, I know Tysabri only stops the frequency of the attacks. It doesn’t stop them all together.

So I did well to get this far. Right?

 

I Don’t Like Those Odds

Statistics, odds and what ifs, all part of the fun as far as drugs are concerned.

I recently had my annual Neuro appointment, only the usual are you happy and such like, but one thing he did mention was the fact that  some people can develop and intolerance to Tysabri, 1 in 20 people in-fact. I just don’t like those odds.

I am almost always in the minority, but this is one thing where I need to be in with the masses.

I do not want the day to come where my body decides that enough is enough, where the games begin again.

I am settled.

I am happy and comfortable with everything right now, I am far from perfect or normal, but that’s okay, I am getting by just fine and I want things to stay that way. 

I know its a ‘what if’ and a ‘maybe’ kind of thing and people can tell me I will be fine until they are blue in the face, but 1 in 20 gives me a higher change of it happening.

I expected some high triple digit number, not a measly 20.

That means I would have to start again, after having the inevitable crash stopping the nice drugs would bring. I don’t want that, I don’t think I am strong enough to do that again this year.

Why does life have to be so damn complicated?

Why can’t it just be easy, nothing is ever easy for this family.

How did I get here?

I refuse to be in the minority again. I think its my turn to sit and chill with the masses for a change!

 

Today Was A Long One

So today was number two tysabri. I wrote last week about my bloody cold sore, which could have caused them say no and turn me away for the nice drugs (hey drugs is all I have) BUT I put cream on over 10 times a day, no joke, and it went away!

So I was okay to have the nice, nice drugs.

They always do your stats first, blood pressure, temp etc. And guess what, my pulse was sky high. Firstly, Gloucester Royal is a maze, its literally like being a hamster. So after navigating my way to the ward, I was not surprised. However it didn’t go down after resting so I had to have an ECG.

I was asked to undo my bra (remember this part) had those sticky things everywhere, the lady counted stuff on paper shook her head and took it to the doctors. I walked back to the room where all the people with MS sit, in a row, with tea. 

No joke.

I explained how I had coffee and a pint of coke with my breakfast. Now I know your probably gawping BUT I was at Frankie and Bennys and the lady had told me to inflate my veins with liquid and as it was mid-morning, they were my liquids of choice.

The doctor said the Tysabri would bring down my pulse anyway and it may be that my body was not keen on the caffeine. Or so much caffeine at once. Who knows?!

Anyway que cannulating which meant stabbing at my hidden veins. It was also at this point I realised I had six boobs. I had forgotten to do my nice bra up, which meant my boobs had dropped beneath the bra, I have had two kids that’s my excuse, and the bra was making a bid for freedom, so I had to ask Hubby to do it up. My MS brain does not cope with doing it up behind.

I am a do it up then put it on like a jumper bra person. Not someone who puts it on and magically puts there arms behind there backs and clips it, neither am I a do it up then turn it round person. Its over the head for me. 

Anyway, they got a vein the first time, I had some blood taken and started on the lovely nice drugs. 

All went well after all that kerfuffle. However I was monitored the whole time because of my high pulse, I think this may happen everytime now?

I ended up spending all day, in a dreary room with a tube in my arm. It was a long day.

How was your day and what kind of bra person are you?!

 

Not The Happiest Bunny….

I am really not the happiest bunny right now. In-fact I think only crude fart jokes will cheer me up, the mood I’m in. 

Firstly I really miss home. I love being at my home but I just miss my bed and my shower and my toilet roll. Yes the last one was meant to be in that list. Mother has the kind of toilet roll that your fingers go through, but that’s a  post for another day!

Then I miss Skye, she has gone to Nanny Stratfords as Mum and Dad have cats and Skye loves cat, in the eating kind of sense. So I am missing her big doggy cuddles right now.

Another is seeing my house in a state. Plaster dust, like I haven’t had enough of that recently when we had the mould work done. It gets everywhere and is simply impossible to get out.

Fun.

Lastly and probably the biggest reason I am a moody, disinterested cow is the fact that I have a cold sore. I only ever get them when I am tired out and down, which I am. Only because I am ready for my next infusion of Tysabri, which was Monday. But due to the lovely uninvited guest that is crusting over on my lip, this cannot happen. 

This is more than sucky. This is fucked up. 

I have one because I need the damn drugs, but I cannot have the damn drugs because I have one? How?

I know why, but my stupid brain just cannot comprehend it.

They will put it back a week but if it has not gone or I have a stupid cold or such like, I will have to wait a month. A whole month. This scares me because I know my poor body needs this right now. Also because I am so tired, I need the boost. I enjoyed feeling slightly more human, and I really don’t think I am asking too much for wanting this again.

So, here goes me trying to live a week (I pray that is all) without the lovely, lovely drugs.

Watch this space but don’t stare at my face, the cold sore is rank.

 

These Are My Intentions

When I first started my blog, I needed a place to vent. Its still my place to vent, and it always will be. But for me I feel I have grown as a person, and I have taken the first few steps into facing my future.

This week I whole heartedly  re-started my Tysabri, its a risk and maybe part of me still feels like a slight guinea pig, but right now I need help to control my relapses and be a Mum to the girls. They are what matters.

So every four weeks I will take the trip to the hospital, vomit, faint and sit still until they find an elusive vein. I have and do feel like giving up sometimes (yes already, I hate vomiting and it was a waste of a perfectly good muffin) but I know I can’t, I have to stick it out.

Having Multiple Sclerosis has shown me just how precious life can be, how you can suddenly be given some news that will forever change your life, it changes who you are. I know some people won’t agree with that statement, but its true. I am not the same person I was before that day. I now have a really viable excuse to be bitter, got to love a good excuse 😛

Seriously though, it changed me for the better and I really hope I can help more people with MS and educate more people about MS.

That’s another reason I took the treatment, so I can do all that I want to do. So I have the energy to push that teeny bit further.

I want to be strong enough to face the people who might not be my biggest fans, with a smile on my face.

I want to give the girls and Hubby all that I can.

I want to play with the girls without getting impossibly tired.

I want to stay awake all night talking with Hubby, just being together like we used to.

I want to fight hard to get more people educated on MS and start seeing it for what it is. Impossible. Lifelong.

I want to finish my book!

I know I will never be able to do everything I want to like I want to, but I will try and do them to the best of my ability, with support.

I have no choice but to live with this forever. I may fall, tremor or forget things (alot) but I am learning, slowly, to live with it and I have started to ignore the ignorance of some people when it comes to neurological diseases. I have ways to turn even the hardest of situations into something funny.

Its how I choose to deal with it. As is my openness of the drugs I have to take to simply get up and smile. I am not afraid to say I have them or that sometimes the drugs we get are the only upside of having MS.

Hell, were the only ones entitled to the new legalised cannabis spray!! 

So this right now, is me.