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.

Day one of steroids

The nurse arrived about 9.30am and set up all the gubbins needed for the three day infusion!

Then came the time to find a vein.. I dread this. See my veins are practically non-existent, no amount of pumping or squeezing helps! After digging about under the skin for like 3 mins I suddenly felt like I might faint, I asked to stop and ran to the toilet, where i proceeded to throw up. Now im not scared of needles by a long way, the amount of tattoos i have proves this, but the thought of someone digging about under my skin makes my stomach turn. 

So after throwing up and getting a drink we decided to go and put my arm under HOT water, as hot as you can stand I was told and I like my baths hot so this was no issue, theres nothing I like more than looking like a salmon after a nice bath!

Then she had another go, then another, then another then yes another. I felt awful for her as so was so determined to get a line in, it was just not going to happen! After much pumping and making a hot water bottle she decided to give up and call a different nurse, the nurse agreed to come and the nurse who was already there left.

The new nurse came and again I told her to please not warn me with ‘sharp scratch’ as I dont need to no! Im poked often enough to just sit calmly and let them try. Sure enough she got the vein immediately, only downside is its on the bend of my elbow and as its in for three days doing jobs and holding my little one is extremely tough going.

The methyl Pred drip was soon started and it took an hour to drip through! There was an odd uncomfortable silence between me and nurse lady!We watched channel 5 and clocked watched. She repeatedly did the normal blood sugar checks and took my blood pressure! Which is always A ok!

Now im sat with my arm bandaged up with sticky plasters all over my hand from the first nurse. I have a vile metal taste in my mouth, so all food and drink tastes VILE! I am very tired and hoping the next two days go quickly without any more issues! im not sure if I can take anymore prodding, even if i no its for the best. Theres not really too much to report now as i simply feel drained and useless!  

Days like These……..

It is days like today and yesterday that make you remember just how unexpected and volatile MS can be.

You can be quietly getting on with things minding your own business, then BAM! Your hit with extremely extreme fatigue, dead feeling legs whilst trying to tackle to always scary stairs and tremors when you are trying to eat your tea and simply relax. Especially not nice when you have guests for tea.

I have to say i did not think I could possibly feel any worse until the previous evening. I knew i needed to go to bed but I have two young children, so that is easier said than done. Wait… yes… the tremors are back. Anyway… Luckily nanny was here and offered to take Beboo for the night so I could sleep and have some kind of a lie-in. I was very reluctant but I knew it was for the best, with all thats been going on nanny has been a god send, taking Beboo when I need five minutes or a night of pure sleep, even though Hubby is fantastic. But I just want to keep Beboo with me more, but last night I was at my wits end. I look forward to Hubby bringing her home this afternoon, after work.

So for the first time i am officially looking forward to starting steroids tomorrow, even just for the energy boost in about a weeks time! Today I will enjoy the rest and time with Pops before Hubby and Beboo return. At which time I will take my baby and cuddle her all night! 

Stand by for more wining as I take on my next load of steroids, getting them on-board is by far the worst part!