Today I feel like death!

Well here I am, day two since steroids finished and I feel like death. I was so impressed with how well I was feeling despite being FULL of drugs, but then last night hit and now I am totally feeling it.

Luckily I have had someone with me each day, its still got me thinking. 

I am a mum and I want to do all the things mums do every day! I do not want this week where im either hooked up to a drip or shaking so bad a can barely stand. I want to run around and do daft things and not have to rely on someone else for help. I already have to do this in other parts of my life! 

Therefore I have made the choice to not have anymore steroid treatments for my further attacks/activity. Part of me feels silly for saying it, but I hate the way I am feeling right now, I cant keep going through it all the time. I just wanted some relief from everything, some time to feel normal again. I guess this is what comes with having such an unpredictable ‘condition’ 

For now I will wait for the side effects to finish, until I feel somewhat human again! 

Anyone whos been there, is there I would very much welcome some advice, well off I go to the land of nodd to find some of that missing energy! Night all x

You dont define me

You dont define me. Tonight I have come to realise that my MS does not define me, but sometimes I find myself letting it define me without even realising it! I asked my self why I was letting something like this determin who and what I am.

What defines me is being a mother, my two wonderful children have made me who I am today. Im not afraid to say as I teen I was not popular, and I was very insecure, and that still follows me around today. I was a very jelious person and at one point this left me alone. They say leopards dont change there spots, but I can safely say I have. Im now much less fussed by other peoples thoughts about me, I no who I am and I no im happy in the life I lead. People who know me and judge me for my past and my mistakes etc, need to look at themselves before judging another. If having MS has taught me one thing it is to take nothing at face value. You have no idea the fight someone is having inside there skin.

Being a wife also defines me, it has taught me to love and share and listen. Until recently I hated hubby going out and things but now it doesnt bother me so much, he comes home to me and were learning to trust a great deal more. Although I would like to come along sometimes but thats simply to meet new people and show them there is a face behind the MS.
My whole family and lifestyle is what makes me who I am from my mum to my dad, my sister to my brother, mother in law to sister in law they all make me who I am and have shown me that endless love and support is out there and I should not be afraid to ask for help.

I feel maybe I could be moving on from sadness, maybe all that has gone on, I am starting to accept, as I have all the support behind me I need to go on and face this monster. I no I will have my down days and I no I will still struggle. Ill cry those unstopable tears but I will remember to live everyday as it comes and to smile when im feeling it most, a smile goes along way. 

The littlest, my MS baby

Beboo is my four and a half month old daughter! Whilst pregnant with this little lady I found out I had MS. 

She was there with me during the eye exams, the news it looked like it could be MS, my very odd MRI scan (try doing that at 28 weeks pregnant!) a very painful and long lumbar puncture (which all I wanted to do throughout was fart!) my VEP test and the normal usual thousands of blood tests they do to try and diagnose such things!

Thing is and at times I feel awful for saying it, but I feel like she is the closest person too me, although she was unaware she was the one I felt kicking during my MRI, when I was feeling so alone and scared all that kept me going was her little kicks and punches, I knew I was not alone. She was there through the tears I cried, everytime I fell, everytime I felt like giving up Beboo was there!

Now dont get me wrong I do not have a favorite, I just somehow feel closer to her, I feel like she gets me and what I went through to get this far! For this i feel its why she has turned out a complete mummys girl! Sometimes I feel like she was my miracle baby!

I guess I no i love my girlys the same, but I find the fact that Beboo was there all the time such a comforting feeling, like I have her to thank for keeping me going through all the vile times, when I was massive and just wanted the whole thing over with! Am I wrong? Are you all sitting there and judging me? I hope not! 🙂

Last day of steroids

Well the nurse just left from my last dose! The vein in my arm that had been open for two days had shut down! This meant more stabbing! This time in my leg! But luckily it went in first time so I was soon hooked up and getting my last lot! 

We talked about the vile metallic taste and the nurse said that polos help! Luckily I had some and yes they do help! 

Now ust sat with my foot up to let the steroids go round and not dribble down my leg like I have been warned! I am so glad its over!

Only thing is im only allowed once more course for the rest of the year, so I pray I can start my daily injections soon, and stop the flare ups I have had so many off!  

My monster

How I see my monster? Its something I often think about. I mean it isn’t like MS is a bug or a parasite, its not a living entity. It kind of just is?
The way I feel about it is my body is essentially at war with itself, its attacking all the thing I personally find useful, like my sight and ability to walk without the aid of a stick. I picture my monster to be sat in some deep dark corner of my mind slowly taking control. I don’t intend to give up on myself, I do intend to feel sorry for myself at times when I deserve to! I find the more I fight the more it seems to take control, but everyone says ‘your strong’ but am I? Only hubby really seeing how much it affects me physically and emotionally, I have pushed a lot of friends away.

I guess for years I did seem lazy and like I was simply uninterested but I just wasn’t able. I let people get the better of my emotions and the depression that has become such a part of my life hit its peak. Thats one thing that people debate most, is depression there? Well yes it is! Like MS you arnt able to see it as such but you know its there and for whoever has it its very real. I no depression will be something I will always have to battle with as I don’t think ill ever feel 100% about it.

My monster effects my ability to parent like a normal mother. I cannot go out alone with my children and I cannot see if there is a car coming or not. I should really use my support stick more as when I walk some distance my left leg starts to buckle from beneath me, pop’s is always dobbing me into the support worker for falling over because I didn’t take my stick.

To a passes by I look completely normal, but if you were to step into my shoes for a day you would see just how much this monster is currently affecting me. Thing I didn’t really think of before Beboo was born, having to make bottles, I cannot do this as I cannot see the water level. Very recently my right eye has started to become blurred when I do any physical exercise! Which essentially means I cannot see a thing, so staying calm and quite is something I tend to do!

My monster has also recently presented me with tremors normally when im concentrating on something I have to do, which at times can be very awkward.

Family and friends have been a great support although my mum seems to blame herself? For what reason I don’t no, but im determined to show her I will do my best. I’m very much looking forward to my neurologist choosing a daily medication for me, as hopefully it will give me some relief. Although after reading some MS mummy blogs I see that even these bring with them side effects.