Four and five weeks on: Jealousy and blue cheese.

Highlights:
- Still coughing but the cold has gone!
- First blood test done and dusted!
- Full drinking capability has returned.
- Bye bye to the one month pregnancy diet.

So I had my first blood test last week. I'll never embrace the fact that someone utters the words "sharp scratch", sticks a very sharp object into one of my veins,  drains me of my blood whilst I wait for the magic words "got it". Anyway, a few days later and I get the results back that they are within the expected range and my lymphocyte count was good for the first blood test at 0.5. I must Google what normal lymphocyte count is...

What I am finding now is that I am becoming jealous of all those people who are starting/have completed round 2 of Lemtrada. I want to be further on with the treatment. How exciting it must be to know that (hopefully) the end is in sight.

Finally, I had some blue cheese on Saturday and it was delicious.

That is all 😊

Three weeks on: Shiraz my old friend.

Three weeks since I completed my first round of Lemtrada! It has gone so quick. I'm still full of a cough and cold, but I also feel pretty good. Seems bizarre! My ears are still constantly ringing. I fancied an alcoholic drink for the first time in four weeks. I must be on the mend 👍 I haven't done four weeks without a drink since I was pregnant with the twins over four years ago. 🍷🍷🍷

The weather was lovely this weekend, so I sat in the garden soaking up some vitamin d. Only I can get sunburnt when it's 15 degrees celsius. Pig pink. I usually whack on the kids suntan lotion in summer when it gets hot. I didn't think I'd need it for a warmish Saturday afternoon in March.

Then just as I think I am doing well, Mr W gets pneumonia! His doc said we shouldn't be around each other because of my immune system... but what can you do?! Got my first blood test next Monday. It's going to be an interesting couple of weeks... wish me luck!

Two weeks on: Snotty snot snots

What a funny old week.

The week started with me feeling like I was "getting somewhere". I had a little walk around on Monday. It was tiring, but it was nice to get out. Also started with a bit of a cough, nothing major. Checked with MS nurse if I should go to docs or not. The advice being give it another day or two and if the cough gets worse, go and see the doc. Rested Tuesday. Woke up Wed feeling almost "normal", from what I remember normal to be. Numbness felt like it was easing, rash gone and my walking felt more steady. Spent a lot of the day in the garden reading instructions to Mr W on how to put up a wooden play house/shed for the twins. The sun was out. It felt so nice to feel human!! It's hard to explain, but I felt good. Then Thursday came, and so did the cold from hell. I could produce enough snot for hundreds of gooey louis games, every hour. It's Sunday now and I'm totally wiped out. The snot production must be draining me of all my energy reserves. I'm on my third bog roll from blowing my nose. I'm just taking paracetamol because I don't know if you can have cold/flu tablets, or sudafed tablets (my saving grace when it comes to colds). Still coughing. Have already googled pneumonia, just in case. I don't have the symptoms, so I'm OK...

My plan is to ride this cold out, then hope to feel like that almost human being I experienced on Wed. Please God, don't let it be the steroids that made me feel so good. I keep reading about people who feel ace weeks 3/4 post Lemtrada, and then they dip big time. Watch this space...

One week on: oh the itchiness!!

Well one week ago I got discharged after completing round one of Lemtrada. I'm not sure where the week has gone, but by'eck has it gone quick!!

I won't lie, the first few nights at home were tough. You go to bed feeling shattered. 1am and still not asleep. 1.30am and the shivers start. I've never known will power like the will power I demonstrated on Sunday night when I was shivering, desperate for a wee and wanting to get my dressing gown off the door. But I did it, after nearly an hour of psyching myself up. Finally drift off around 4am, then wake up in a pool of sweat around 5.30am. Lovely. But I can say this is short lived. The last couple of nights have been relatively normal. No hot/cold sweats 👍

The days have been fine, just feeling tired. I didn't leave the house until Wednesday as I just felt so weak. The appetite is coming back too.

How am I feeling now?
Itchy!!! Really itchy!! The rash made a return on Wednesday. It didn't bother me in hospital, or when it came back on Wed. But it is bothering me now. A lot. I've got piriton and eurax cream. Soon I'm going to get a cheese grater. Argh it is annoying.

The numbness in my feet, legs, torso, face and hands increased. But apparently this can happen so I'm not worried.

Ringing in my ears. This started not long after being discharged.

Fatigue. I was really pleased when I went in to the outside world on Wednesday. But the 20ft walk to the car took it's toll on my legs.

Pains in arms, legs and back. I used to get these at night. Now I get them in the day.

It's going to take time. I know this. Some people seem to see immediate results. Some don't feel any better until after round two. Some don't feel better at all, but mri results show no new activity, which is what Lemtrada is designed to do. Slow down progression and reduce the chance of a relapse.

Now where is that cheese grater...

Day five and beyond: homeward bound

The day I had been waiting for. The last day of Lemtrada and the day I got to go home.

Didn't sleep that great during the night. Not because I felt ill or anything, it must just be the steroids. Can't seem to drop off!! And then you've gotta love the 5.45am obs checks...

The last day was all about counting down the four hours of Lemtrada... tick tock! Uh oh bad headache again, sorted with a couple of paracetamol. And then my knight in shining armour turns up. Mr W has arrived to take me home! I get packed off with a months worth of tablets and sent on my way at about 2.30pm. I "walk" out like a frail 90 year old, but I don't care. It's not forever :)

My first night at home was a bit rough. Hot and cold sweats. No temperature. I blame steroids again! It was mid afternoon the next day I felt like I had turned a corner. Just feel very tired. Even today, two days after leaving the hospital, I feel weak and tired. I don't mind. It's the long game. And Rome wasn't built in a day right? ;)

Now Mr W, bring me my meds...

Day four: Zonked

So that's my last "full day" of hospital, four fifths of my immune system shot, just one dose of Lemtrada left tomorrow.... nearly there!!

The treatment went well today, and no steroids with that mankey taste! Felt very wiped out about 30 mins in. Also quite light headed an hour in. The rash appeared but was controlled by piriton and eurax cream. I'm trying my best not to fall asleep as I want to save it for bed time!

Update.... 9pm covered in the rash from my scalp to my knees!

Night all x

Bit of a dull day really. Very strange to think that whilst I'm sat here, my immune system is being killed off... very strange indeed.

Day three: Chinese hamster ovaries

I've already mentioned in a previous post about how wonderful and informative the facebook Lemtrada groups have been for me. But today I found out the best bit of information ever! Lemtrada is made of Chinese hamster ovaries. Not sure why hamsters, or why Chinese ones at that. Bloody good job I'm not vegan.

So that's the third day done and dusted. Three fifths of my immune system smashed. Overall a good day. Slept like a baby last night thanks to the little blue bill. Not Viagra. Or at I hope not because that would have been disappointing!!

No new symptoms. Feeling more tired as I entered the third hour of Lemtrada. No more steroids now woo hoo! Just pure Lemtrada for the next two days. And still no proper rash.

Starting to get excited about going home. These plastic mattresses and pillows aren't overly comfy. Your own bathroom, a couch, an arm chair ahh.... oh yeah, and the kids, the husband and the dogs 😊 being able to move out of one room. That reminds me, Mr W I request fresh bedding on my return 😘

Day two: Sleep is overrated anyway.

Now on day two yeah! Had the 30 mins of steroids plus some oral tablets, and then the delightful Lemtrada for 4 hours. The morning was fine. Just a mild headache and fatigue. The afternoon was also good. No rash as yet. Plain sailing!

How was last night I hear you ask... Had some more codine because of headache that wouldn't shift. Had a really dry mouth all night, despite drinking gallons of water. Didn't sleep well because of the steroids, random leg twitching and usual hospital noise. Today I'm going to beg for the sleeping tablet as the tiredness is really affecting my legs. Also sent Mr W on a mission to find me an eye mask. He did good! I will sleep god damn it!!

And no, my bowels haven't "opened" today yet 😂

All in all, feeling very positive 😊

Day one: Hello Lemtrada. I love you.

So it's 3.30pm on my first day of Lemtrada and the good stuff has just started to be pumped through my veins. I feel so elated. I can't express just how relieved/excited/grateful I feel right now :)

How was my day? So far so good. Arrived at 830am and went straight to my bed. Within no time I'd had a urine test and blood taken. I say within no time.... oh god the cannula. The only thing I'd been dreading. My veins are naff, really naff. I've had needles in the tops of my feet when I had a c section. That was bad. Luckily the doctor did it and it was painless. Cannula done in seconds. I've got it in my left arm, on the inside where the bend is. What do you call that area? Inner elbow?

Then there was a bit of a wait whilst bloods were tested. Took about an hour and then the package of joy was ordered. I had some tablets (piriton, antiviral and something else, I can't remember) and then some more waiting. Hurrah my steroids arrived (30 mins through cannula), then some more piriton through cannula(few mins) and then the amber nectar. Oh how I want to kiss you! Four hours of liquid bliss... tick tock... Then wham bam!!! Felt like I'd been hit with flu. Headache, limb ache, trembling and tight chest. All managed with medication and some oxygen. Nothing to worry about 👍 am back to my normal self 😊 very hungry,  but that is my normal self. Hoping for a good sleep. Going to ask about sleeping tablet I think 😴

Few tips:
- get those mints and fruity sweets ready. After ten minutes of steroids, I got "the taste"
- bring food and plenty of it. Thumbs down for hospital food.
- drink loads of water. Only doing this because other folk tell me to!
- don't be afraid to ask the nurse for painkillers, and use the word "severe" if you need to

I will update again tomorrow. Fingers crossed for an easy night.

Good luck Mr W who is in sole charge of the babas. Remember they are 4, you are 41 x x love and kisses for you and the babas x x x

Lemtrada Eve....

Twas the Night before Lemtrada

Twas the night before Lemtrada, when all through the house
Not a creature was stirring, not even a mouse.
The hospital bags were packed with care,
In hopes that the infusion soon would be there.

Very excited now. All weekend I've been dreading the phone ringing in case it's the hospital cancelling because of a bed shortage. Just hope I can sleep tonight!

I'm stocked up on fruit sweets and mints ready for the taste the steroids apparently leave. Evian to keep me hydrated. Eurax cream for the itchy rash. Diet coke because I can't live without it. Something chocolatey, because I like it. Some new £6 trackies from good old asda for my "comfortable day clothes". Pretty much sorted 👍

Now the downside... not seeing my little family each night 😔 

Fingers crossed for a positive start tomorrow!!

Three days to go... Lemtrada, I hear you!

I'm struggling today. Didn't sleep well last night and the consequences of that are a lot of leg/back pain, struggling to walk and feel like I could sleep for a year 😴 I am just so grateful that I am only three days away from the good stuff! It's days like this that make me so thankful there are drugs out there to slow down progression. I seem to be getting slightly worse each day that goes by.

On the positive, Mr W took me out for a pre-birthday lunch which was very nice. My two little cherubs came out of pre-school with lots of "presents" that they had made for me. I swear the teachers there mustn't need to put any cardboard out for recycling in their bins. I was presented with various perfume/egg/medicine/tissue boxes with goggly eyes stuck on them and some scribble. Beautiful. Thanks my little kiddywinkles 😘😘

I'm throwing loads of water down my neck to make my veins nice and juicy for Monday. Oh how I hate needles. Needles and dentists. Awful. I once went in to hospital for an operation on my leg. They did the usual blood test when I arrived. I passed out from the blood test and woke up thinking the operation was over. But no. And they hadn't even managed to take any blood. I never understand why they need to take so much blood. Surely a little pin prick would suffice?? Please?!

Four days to go...

I still haven't come down with the cold that everyone else has 👍 and I'm getting more excited about the treatment on Monday. Need to get my backside in gear and start to think about what I need to take... How windy has it been today?!

I've not really talked about my condition, so here we go.... the highlights...
- Oct 2015 extremely exhausted, couldn't think straight, started to forget words. Put it down to a stressful job and having 2 year old twins.
- Jan 2016 numbness in my left foot which spread up my leg and up my side. Had blood tests and back x ray. All clear so referred to neurologist. Decided to pay private as nhs waiting list was so long, who arranged for mri.
- April/May 2016 mri showed lesions. Now had numbness from left toes up to left eyebrow. Vision on left eye was very "patchy" and colours looked different. Legs felt very heavy when walking.
- Summer 2016 had lumbar puncture and some electric eye test thing (can't remember proper name). Saw registrar who confirmed I had optic neuritis in both eyes and the lumbar puncture results supported diagnosis of RRMS. By now, my right side from my toes had gone numb up to my arm pit. Walking was getting difficult.
This led on to blood tests in preparation for lemtrada.

So here I am now. Still got numbness in both sides, severe fatigue, can't walk very well without holding on to husbands arm, seem to be able to fall over thin air, poor concentration, poor memory, can't stand without discomfort, very tense and painful back, painful legs and sides at night, really stiff and in pain when I first get up in a morning... it's all fun and games 😊 and 36 in 3 days 😱

One the plus side, it's nearly wine o'clock 🍷

Five days to go...

I seem to be avoiding the cold that's been working it's way through the household. Mr W started with it first, then the boy and now the girl is just getting over it. This made me realise I haven't had a cold or flu for months. Is it to do with the high dose vitamin d I've been taking on my neuro's advice? There are rumblings out there that it can be more effective than the flu jab.... I just hope I keep avoiding it so I can get that juicy lemtrada. Fingers crossed!!

Spoke to my MS nurse today. Lovely bloke. Very helpful. I wanted to know if there's anything I should be doing before Monday. Not much really! Just avoid uncooked food, keep hydrated and don't go on a bender the night before.... it's my birthday on Sunday. I'll have to cancel painting the town red. If only! No painting anything with this fatigue and numbness and blah blah.

So I will celebrate my birthday on Saturday. No pressure Mr W, but I want to do something nice on Friday whilst the kids are in preschool and I want a birthday cake...

Six days to go...

What a great day for information! Got to love Facebook. I've joined and been welcomed in to a fantastic group for Lemtrada UK and Ireland. I urge anyone considering/having/had the treatment to join.

****disclaimer****
I am no medical expert so please do not follow my lead!

They have taught me that you can drink after treatment, you just get drunk a lot quicker..... yes! Fewer calories!

You can move around inbetween observations. Hello the onsite M&S food hall.

You sleep like a baby thanks to sleeping tablets. This I cannot wait for. Anyone with young children will appreciate my excitement. Babas, I love you and will miss you for the five days I'm in hospital, but hello full nights sleep with not having to keep and ear out.

What more do you need to know?

1 week to go...

So, here we go! All being well, this time next week I should have had my first glug of Lemtrada. I say "glug" because I'm fancying a glass of wine right now so I've just sent Mr W out to get some. Which reminds me, I need to find out if you can drink wine once the treatment is complete.....

Overall I am very excited to be getting lemtrada next week. I was diagnosed with highly active relapsing-remitting MS in August 2016 and it has certainly taken its toll on me. I look forward to knowing that I have had some treatment that will slow down the progression of this disease and reduce my relapses. Bring it on.

Mr W has just poured me a glass. Watch this space if you want to find out how it all goes! Fingers crossed the current dire state of the NHS doesn't mean there isn't any funding for my treatment, or the neurology department don't lose my bed!!