The Operation

So yesterday Ninny went in for her operation on her eye. She has been waiting ages. Every time we had a reason we couldn’t go. Important family events, illness and all sorts of unusual things that just came along at the wrong time.

So when we got a call about a cancelation on Thursday for the very next day, we didn’t really have a choice. We had to go for it.

Grab the bull by the horns so to speak.

So that’s just what we did. Woke up at 6am on Friday by a very excited Ninny. She had her special hospital bear from “the hospital” (me) ready, so it was all systems go.

The day went without a hitch. She chose me to take her down for sedation. Which I totally didn’t expect. I was ready for her to be all about Daddy, but it was a Mummy day.

I think we were both secretly terrified walking down to the room. I sat on a tiny chair and placed my giant 6 year old on my lap (she is not a baby anymore. I can guarantee you that much) My arms don’t work well these days, so I was worried I wouldn’t be able to carry her across. And as the gas took longer and longer, I was worried I would let go altogether.

But I didn’t. I held her closer as the gas got closer. She wriggled, but that was something they had warned us about. His hand was holding the gas right underneath her nose but she was still not out. It was replaced with a mask and I watched her slowly drift off. Still coughing from the gas. She went floppy and I was asked to place her on the bed.

Then told to kiss her goodbye. It was the hardest kiss goodbye yet. I was trusting her life with someone else. My little baby looked so genuinely helpless.

I walked out crying, then cried for a further 10 minutes.

The waiting was horrid. Truly awful. All I wanted was to see her smiley mush.

45 minutes and we were finally called to recovery.

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She looked so helpless. She woke up for a few seconds but drifted back off quickly. We wheeled her through and we let her sleep. The young boy previous had broken down when he woke up. I was terrified of Ninny doing the same. How would I cope? I wouldn’t cope. I would stand back and let Ben take over.

But I didn’t.

I pulled up my big girl pants and my Mumness took over. She was far less shouty than he was, but she had slept for far longer.

I cannot tell you how amazing it was to be able to kiss her again. Still today we watched a film together and I didn’t let her go the whole time.

Her eye is still very inflamed and she’s still seeing double. So we are taking it easy.

Ninny decided she wanted to do a video diary, so please give them a watch. People I talk to now don’t remember the eye op they had as a child, but Ninny can, and other people can see what it entails.

But I Don’t Look Sick?!

I tend to find myself looking in the mirror and wondering if its all real. Its so odd because I just don’t look sick. Granted I look tired and the bags under my eyes are slowly turning into black bin bags but still, I don’t look sick.

People tend to forget hidden illnesses are equally as hard to grasp for the person who has it, as well as the passer by who simply doesn’t know better.

I find myself sitting and wondering whats going on in my head, I have been keeping myself busy because I know too much thinking can be bad, because thinking leads to wondering and wondering leads to all kinds of crazy shit!

I guess recently I have been feeling a  little low, I have so much to do, and I just cannot find the want to do it. But, at the same time I do want to do it?! Nah, I don’t get it either. 

I find it hard to express the way because “I’m tired” doesn’t cut it, but it seems to be my answer of choice. I guess no one really wants to hear that I have chronic fatigue and today, it hurts like hell.

Hey, I even tried to push myself this week, it was for personal gain as well as the family. I figured maybe I need to do more? Turns out doing more just makes things worse, it pushes you to that wall, the one you cannot go over ,under or through, so you just sit there sobbing and smelling like an old bag of potatoes. 

And lets face it, that’s not fun for anyone.

Its hard some days, not having someone who really understands. People try and I appreciate it, but some days you just want someone who feels that pain, who has hips and a bladder like yours, who understands MS and feels it too.

Some days you just feel so ‘meh’ like nothing is worth moving for, you just feel so empty.

I like to immerse myself into the girls, TV or the online world, so for a second I can take a step back from who I am and feel nothing for a while, but it is more of a something nothing as apposed to an empty nothing.

For me, by far the hardest part right now is looking in the mirror and feeling like a complete stranger. One who is not alone behind those eyes anymore, but at the same time, you just cannot see it.

The Life Behind My Eyes

Sometimes I look in the mirror and wonder, what’s going on in there? What it is that is happening behind my eyes?

I look at myself and see the same person I always did. Yes a little fatter and with much darker circles around my eyes but I am still there, starring back at me. I cannot see anything wrong with me, so I am not surprised if other people don’t either.

I often stare and wonder, did they make a mistake? I am making it all up in my mind? I cannot be this person I so often see written down on paper, surely?

Is it denial?

Or is it guilt?

Maybe even a dream? No?

If it is denial, it could explain some things, although I don’t think its ever going to sit well with me, I still sometimes find it hard to work it all out. 

If its guilt then maybe I would get it, I put pressure on everyone around me to do more than they normally do, I tire easily and I don’t always have the patience of a saint. Sometimes I wish I could be alone for an hour, to think, think with a clear head.

Sometimes I ask Hubby is this is really happening to me, he doesn’t understand why and I really cannot blame him, it drives me mad too.

I know its real, but then I don’t and sometimes I block it out all together.

Why am I so weird and how did this become normal?

I would love to know what is going on behind my eyes.


Beboo’s Birth

I’ve decided to write my second birth story, my first has become very blurred with all the things going on at the moment, so here it goes…
I planned to have a home birth, I even brought the pool so I was all ready, then I got the dreaded diagnosis and it all changed.
I was induced at 38+5 weeks because I needed to have my first course of steriods and I wasnt happy to put Beboo through anything else as she had already been there through my MRI, Lumbar puncture and VEP test.
Early in the morning on the 20th of february I went into the hospital to start the induction process. Now I no my frist birth was 52 hours so I held no hope for a quick labour this time either! I had all the usual tests and was already 2cm, so quite pleased. The pessary was insterted and me and hubby were left to play, which we probably shouldnt have done but like the children we are we couldnt resist having a laugh and a joke!
Quote ‘to prove i was here!’
not a good look for me

About 20 minutes later I was having contractions and paranoid the midwife wouldnt believe me as it seemed to quick! But she did and I was soon in the bath growling at hubby to ‘RUB MY BACK’ I may have said this about 1000 times! I had the usual paracetamol but nothing was working, I had never felt pain like this and my first daughter got stuck! My midwife informed me that being induced does tend to hurt more which is just what I wanted to hear! She gave me a choice to carry on with the pessary or remove it have the epidural and start the pitocin drip, I kindly screamed id like the epidural and even though I was only still 2cm I was able to have it as the stress was affecting my sight.
It took the lovely ladies 5 attempts to get the epidural in, I was asked to tell them when I felt a pain in my right leg and as I was not allowed to move and my head was burried in a pillow I kindly shreaked ‘I can feel it now’ needless to say I got told off for shouting, but to be fair my face was pushed into a pillow so they could barely hear me anyway!
Soon I felt much better and the giggles soon began again! I was button happy with my epi! But im not afraid to say if I did it again I would certainly have an epidural!
Four hours soon past and I have my first check since the pitocin began, I expected 4cm but no, I was 10! yes a full 10! I did not believe her at all I was in complete denial as I felt fine!!! She said we will wait an hour then the pushing will begin! It was the quickest hour of my life, all the time I kept repeating that she must be wrong! Soon the hour passed hubby set up the ipod and it was the perfect atmosphere. It took only 6 pushes then my little miricle baby, Beboo, was here! I was so happy, the consultant who has been in close contact with my neurologist came in and she was so amazing I thanked her and cried like a baby!
The emotional whirlwind soon came crashing down as I strated to bleed heavily! After about 10 injections and lots of vomiting and people pushing my tummy they finally got the bleeding to stop. All in all I lost 900mls of blood and was 100mls off a transfusion! Phew!

I was determined to breast feed this one, as with the first I was young and clueless so I didnt even try! Beboo has a great latch and went straight on! I was so pleased! I spent that night feeding and sleeping, well trying, hubby was allowed to stay as he is my carer and his snoring was vile! Even for him! It wasnt until about 1am when I started to panic that my sight had gone, I couldnt see a thing! I was so worried I would never get it back and all the stress had caused my already rubbish eyes to pack up all together! A doctor was called but there wasnt much they could do as all my neurology care was at a different hospital! I was told to stay calm and try and sleep! So I did and by 6am my sight had returned to what I call normal.
Later that day we went home, I was allowed a quick discharge to continue my care at home due to my care needs. I was only able to brestfeed for a few days because of all the medication I had to start taking, but I loved every minute and I wish I could have carried on, but I no I did what I could.
Shes now 4 months and is amazing! She likes to be doing in the day but thats ok! I dont think I will have anymore as I no your protected from attacks during pregnancy, its just the effect it has on your already there symptoms and the afterwards bit! Im so glad my final birth story was a good one! She weighed 6lb 12ozs and was born at 6.30pm.

End of one story, start of a new one x