It’s Still There

I have been a little quiet about my MS recently. There are a few reasons why, I guess?

I know for a fact it’s still there, lets face it, its never going away, right?

Since starting my Tysabri, I have been feeling ‘better’ as better as someone like me can feel anyway. I still tire and have all the other usual symptoms, however I have felt a little more rounded.

Not in the shape sense, well that could be a lie but its nothing a pair of big girl pants can’t fix.

I guess for me its the fact I am different, that is what is holding me back at the moment. Pop’s now goes to school and is starting to ask more questions about why I am poorly, she will start to notice I am not like the other Mums.

Other Mums will also notice I am not like they are. Hubby usually takes Pops to school and picks her up, for various reasons, however I do try and go when I can and when I do go, I make sure I am right at the front, but I am sure other Mums will notice.

Next is the burden that is me. People can tell me I am not a burden, but that will not stop me from feeling like one. To go out whether it be to appointments or just the park, I can’t do it alone. I could give it a damn good go, but that would not be fair on the girls, using my ears alone to tell if there is a car coming is so not reliable enough. 

This means I need someone, people have to sometimes change plans and drop things for me. It’s not a nice feeling I can assure you.

Also, my left eye is basically completely blind now. I only told Hubby this last week because he hadn’t asked previous. I think he was shocked, however I am not fussed, I would rather have a blind eye than a useless, still works a bit kind of eye.

I have come to terms with it and so has my body, its no big deal.  

Depression, this one sneaks up on me all the time, I don’t know why and I cannot explain it, but its happening again. I don’t want to get lost in it again, but sometimes the only way to face it, is embrace it. So who knows what I will need to do this time. 

And right now, I have a cold coming and anyone with MS knows a tiny cold, can become and feel like so much more. Most don’t bat an eye lid but for me, its a bitch. 

I have been trying to carry on and block out the lovely disease that has graced me its presence, but sometimes after a fight, I need a break for a bit, I need to let the pissy days happen and feel sorry for myself for a while.

Watch this space, or not, depending on your preference. 

The Lack Of Feeling, Or Too Much.

I don’t really have many words as to how I feel. In-fact I have really pushed myself to even consider writing. I feel lost, drained and have a complete lack of feeling for anything.

I hate staying in bed, but then I am so very tired?

It really is like a catch 22 thing.

Last night was horrendous, I had hallucinations and could not switch them off. I had a mind full of junk and no idea how to handle it all.

I have so many different drugs coursing through my veins, the painkillers, I tried to stop taking, but it still hurts way too much to do it alone.

Its a feeling I have had before, but it is still very real. The lack of anything and the feeling like the whole world is running away without you is simply terrifying. Like your being left behind, unable to keep up, let alone catch up.

I just want to feel better, to be able to hug the girls without having tired arms, to make my own drink instead of having to ask.

I can’t even go for a piss without a struggle. My brain is screaming for a PEE but my bladder is simply not listening, the amount of time I have spent trying to have a piss this weekend is really quite laughable.

Who knew peeing would need so much concentration?

I am trying to keep myself from napping, partly because I am scared I will once again see things that aren’t there AND partly so I have a fighting chance of a real nights sleep.

Heck, I will probably give myself a drug induced sleep tonight, might stop the incessant shaking.

Anyhow, this whole typing thing is making me tired, so I must retreat back under my blanket, for now.

 

Sleep Angels, Coming To A Pillow Near You!

Sleep, its something we all love and it is also something most parents need to live without. Well this might not be the case for much longer, see at the Baby Show In Birmingham on the 17th, Jo Tantum is launching her new ‘Sleep Angels’ team.

Yup, the lovely Jo has helped many parents across the UK teach their children the art of sleep, lets face it, its one of our biggest hurdles to overcome. So the fact Jo will be hand picking qualified people to under go some intensive training, to join the army of Sleep Angels to come and help us sleep-deprived parents is amazing!

Jo says, ‘It’s always a difficult decision when your business has grown too big for you to do everything, especially as it is so personal.  I have spent the last two years perfecting the training programme and going through everything with a fine tooth comb.  I’m sharing ALL my secrets with my Angels, personally training them to be the best they can be, and I will be with them every step of the way.’

I have to say, I am a firm believer in routine and I think this programme will be an amazing help for parents across the country to learn the art of a good sleep routine.

After training, the Sleep Angels will be sent out to homes of the sleepy, where they will put in place everything they have learnt. What’s more Jo will also be linked through a video monitor so she will always be no hand to observe and offer support.

Jo says, ‘After I had been Maternity Nursing for ten years I found there was no-where else to go.  I was used to being in someone else’s home, the nights, the long hours, and the grateful look on parents faces when their baby is fast asleep.  I wanted to make a difference and I realised that sleep is the one thing that is so important, right from the start, for baby and parents.’

So if you are heading to Birmingham’s Baby Show between the 17th-19th of May, look out for the Sleep Angels stand. Also if you would like more info, or even to become a Sleep Angel, head over to the website.

Drawing A Blank On The Blog…

Yup, I didn’t do my usual post yesterday, I am drawing a blank blogging wise, not because I have run out of things to say, that’s impossible, I just can’t find a way to say it.

I can’t find a way to write it without sounding like a complete twat. 

I started my injections again, not that I want to. I just want to give them another go, I feel lost and a little lifeless.

I ache.

Which after the last two weeks of Hubby being poorly and completely not himself, isn’t really surprising.

I have so much I need to do, crossed with so much I want to do, its causing a massive collision in priorities. And one huge brain fart. It seems the more you want and plan the less you can be arsed to do.

I had a weird moment in the shower, stood there, mind a farty, and I realised I couldn’t feel the water running down my back, I like a hot shower, literally come out looking like a fresh salmon. However no matter how hot it was, I couldn’t feel a thing.

I know that is such a freaky thing to say, but its an equally freaky feeling I can tell you.

I feel like I have hit a huge wall, I am tired, exhausted and ready for a few days of rest, the last to weeks have been more than I was prepared for.

Add to all this the fact Pop’s has impetigo, therefore can’t go to playgroup, makes for one very tired Mummy, one who owes many people a blog post however just cannot find the words to type without getting confused and flappy.

This then makes me forget what I wanted to blog about in the first place, then I get mad and fed up and don’t bother. 

Argh, sorry about the shitty post.

I’ll shut up now. 

Monday Morning Ramblings

Here it is, another week. My week is full off appointments. I think I may have one free day, all I want right now is too be left alone, to be normal for like a week.


Today I am exhausted, this worries me as my steroids have been keeping me going recently, but I feel like now they may start to slowly de-pleat, I will now start one HUGE downer, I can’t tell you how much I want to start my daily injections, just for some normality. 


I also have massive bags under my eyes, I mean massive. I look like a badger, I am not really a make-up fan which I am aware would hide them well. I just wish I didnt have them in the first place, why are they there? How the hell did they get there? I won’t frighten you with a photo.


Play school finishes this week. I love Pops, but six whole weeks without play school? Are you kidding me?!


Hubby seems to be working all the time, which is good for him, but is knackering for me, I cannot tell you how much I am looking forward to bedtime tonight, but its a big amount.


I got my MRI appointment. Its august, fun times ahead I guess? Well I know there’s a brain so I guess were halfway there. 


Its raining again, yup true story. I guess we needed as it has been such a lovely sunny summer. 


I could go to town I suppose? Well why not? Who doesn’t want to walk around town with a bunch of empty shops?


I have got so much crap running through my head I feel I may explode, hubby, kids and blogging are now keeping me going, that and the mocha that is about to be presented to me. 


I know really I don’t have that much to be down about, I guess I’m incredibly stressed and very much wanting to go back to sleep.


I think I may have tonsillitis. 


I will leave you with one of life’s unanswered questions, why do dog farts smell so bad, why do they not come with a bio hazzard warning?