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 😘