Recovery

In to Day five of the recovery and I feel worse than ever. Day One, Saturday, wasn’t too bad and I even went for a short, slow walk to the supermarket. I figured I had this and we would be ok. Sunday I spent a fair bit of time on the couch, sleeping or watching tv. I did feel like I had a sore throat but was hoping it was nothing major. 

Monday completely ripped me apart. I have a cold and the fatigue is all consuming. Fatigue in MS is quite common, and it is a whole body slump, but this, this is so much worse than I have ever felt. My legs ache from fatigue, my brain is muddled and my whole body just wants to curl up and hibernate for 100 years. I have never felt this bad. And to top it off, the cold is an additional annoyance which I can’t fight easily without an immune system. Am feeling very sorry for myself. 

Last week was MS Awareness week here in the UK, and I completely missed it due to being a little preoccupied with my own battle. I try every day to raise awareness of this disease, one way or another. Whether or not it’s this blog, learning a bit more about it myself, or telling someone something else about what can happen to people with it, I am passionate about sharing the knowledge. Like I’ve said in earlier posts, when I was diagnosed, I had no clue what it was or what it was going to mean. To me, to my family and friends. If any of this blog has helped anyone understand it a little more, then I am happy.

So I’m lying here on my couch, feeling sorry for myself. And very slowly typing this up, as the brain isn’t quite functioning normally (complete brain fog), hoping this doesn’t last too long and I can get back to work. I’m bored, and want to get back to normal life already. 

J

Addendum

So that’s it. I’m done for the year! It should have been posting this a month ago, but ho-hum. It is what it is. I’m done. 

After the half hour wait for the flush of my system to calm down I had to then have blood tests! Comical, to say the least. Theee nurses tried to take blood. You know the saying ‘blood from a stone’, I’m a stone!! Three nurses, six attempts! It got to the stage where they were getting the vein, but the blood wasn’t flowing! I know my veins are bad, but this was awful! My arms look like something from the Mummy with all the white bandages covering the needle marks!! First nurse finally got it, but wow, some of the most pain I’ve felt in a long time. 

So now the monthly blood tests begin. I need to be aware of all the additional side effects the EMA have their concerns with. A higher risk of DVT, along with pulmonary embolisms/edema. Not a great deal, but close monitoring and following medical advice should keep me on the road to health and a little more MS freedom. 

So, to the road to recovery, i toast you, my reader. 

J

Round one almost done.

It’s been a bit of a crazy week. After having a great Easter and getting a lot of walking in, I spoke to a nurse at the MS clinic on Tuesday morning, my chest x-rays had come back clear and I was able to continue on with the Lemtrada treatment. Very last minute,  it they were able to fit me in to the last two days on Thursday and Friday. 

Here I was again yesterday, back at the infusion room, in my same chair! So half a dose of steroids since they’ve worn off since I was here last, then four hours of infusion. Same again today (Friday) and with two rounds of blood tests. Start and end of day. 

It was really lovely to see the nurses again. Some of them were so shocked I had pneumonia and said I didn’t look sick or show any signs of it. I keep telling them, I didn’t even feel sick.  It they’ve been great and are a really good bunch of people. You know nirses have yo love their jobs. To do what they do, to get paid so little, is beyond me. They do so much more than my specialist does, and he’s the one who gets the most money for it. He hasn’t even been past. 

One of the other things which has been amazing here, is meeting all the other people in the same boat as me. We’re all in the same position, although some are worse than others.  We’re all fighting the same monster. We all have our different mechanisms of coping. Even during these long Infusion days. I have the iPad on which I’m playing a few games and talking to a few people (and writing this). Others have their movies or shows they are watching. I’m currently sitting next to a woman who is as addicted to Harry Potter as I am. She has watched the whole box set this week. 

The side effects of this are terrifying, but I wouldn’t change having done this for the world. There are far more positives of this than potential side effects. I’m looking forward to being able to get back to walking long distances again, without having to stop to rest my legs. I have noticed with this treatment my taste buds have changed. Am hoping it’s not a permanent thing.  I am also back on the listeria diet for another 4-5 weeks. Just as I was about to get off of it, I have to get back to being careful. And I was very much looking forward to some soft cheeses and a good steak. So when I am off this, we will be going to a nice steak place to gorge on steak, quite possibly with blue cheese sauce. So this now means my birthday and our wedding anniversary dinners will need to be bland. 

So that’s it. I get through today and I’m done for 12 months. Three days next year, and hopefully it will be all I need. Blood tests every month for the next four years. I can manage that. 

Arohanui 

J

No updates

Hello everyone. As Easter arrives with a burst of English summer, I sit here looking at all the pollen floating outside my window. I'm reluctant to venture in to the outside world, and succumb myself to the little fluffy, itchy, eye-grazing, eye-watering spores from hell.  In saying this, I do want to be warm this weekend. I think after the last few weeks, I deserve a little bit of warmth. Real sun-inducing warmth. So I may dose up on some anti-histamines wear wrap around sunglasses and head to the sun. Even if it's only the communal back yard, I can cope with that. The outside areas at the local pubs could also be calling our names. 

I am still waiting for the results from my chest x-rays which I had done last Friday. The NHS system amazes me sometimes. When admitted to hospital with the pneumonia, the chest x-ray was done at some ungodly hour of the morning. The results were back by breakfast. The X-ray done a week later is still outstanding. I'm hanging by a thread here. Until I have this back, there is no progress on my final two infusions. I spoke to one of the nurses at the clinic yesterday, after I left a message for them to call me. I'm to wait until after Easter, and call back to see if the results are back, then they'll try and fit me in when there are some 'chairs' available for an infusion. 

The infusion centre is a room at the hospital with about 14 chairs which they book out for the infusion weeks. Infusions are usually done in the final week of the month. This means, if they are all booked out, then I need to wait until the following month. Don't ask me why this happens, but it does. You would think, because I've already had the first three, they would try to follow up as soon as possible. I did ask if because of how long ago  it was, if I would need to do the steroids again. He wasn't sure, but thought it should be okay and they stay in the system for up to six weeks. I'm not confident I will have the next infusion within this time frame. So it really is up in the air, until at least next week. 

There has been a bit of an upset with the Lemtrada treatment in the community over the past week though. The EMA (European Medicines Agency) has advised to not progress with the treatment for MS sufferers who haven't yet started it. It has concerns with some of the side effects which have presented in a few patients. This has left people in a complete panic and so many patients who have been preparing themselves for the treatment, have been told they will be switched to a new treatment. However, these side effects were documented before starting the treatment and a lot of patients (myself included) were willing to take the risk to increase quality of life. Lemtrada is known to be one of the most successful with longer term benefits than the other treatments. 

Most of the side effects concerned present after day three of treatment, and include lung issues. Which is exactly when my 'pneumonia' started. No one has called me. No one has actually suggested this is the issue for me. I have spoken to the nurses a couple of times now, and they didn't sound at all concerned at my diagnosis. So I'm going with the knowledge of the professionals in this case. Until I hear otherwise, or I can talk to someone, like my neurologist to reassure me. I am going to try and contact them next week. I think some reassurance would be good for my overactive imagination. Although, am sure the older I get, the more indestructible I feel. I've been through worse. But have I? 

I'm going to relax over the long warm, sunny Easter weekend. I will avoid thinking about it. Apart from the constant hand sanitising, anti-bacterial wiping and avoiding potential listeria infected food, I'm going to put it out of my mind. 

I hope you all have a lovely Easter. Over indulge on the eggs and hot cross buns, and take it easy. 
Jxx

Back to the Grindstone

After a solid week of sleeping, I finally ventured out of the house for the first time on Saturday. I felt okay, but was glad Tony was with me to pick me up in case I fell. And to keep me on top of the handwash. Anti-bacterial handwash has become my best and closest friend. I have to say, there is a reason for this. It is amazing how many places you can pick up the most innocent of bacteria. As if any bacteria is innocent. And, as you can imagine, my hands are so very dry. Which I hate. But it's keeping me healthy and away from infection, so I'll pay the price. So my second best friend is now hand cream. And the stronger, the better. So to the coffee shop we went.  I wasn't game enough to have coffee though when my anti-biotics have also warned me off caffeine, so a hot chocolate was my treat. 

Sunday was another walk to the coffee shop. And I managed a little bit further again, being a quick visit to Tesco to pick up some groceries. Staying away from people in a supermarket is so much harder than you would think.  The worst ones being the ones who are sneezing and coughing, without covering up. This was my first day of being able to have a coffee in a week. It was only a weak flat white, and after a week without it, tasted divine. 

Back to work in my home office on Monday morning bright and early. After two weeks of not having to be up for the alarm clock, this was a little bit of a rude awakening. Unfortunately the come-down from the steroids has also set in, so sleep hasn't been all that forthcoming when going to bed. As you can imagine, getting up early after two weeks of not having to be, the added issue of coming down off the steroids and not sleeping, waking up Monday morning was a bit of a tough call.  Hello! full strength coffee. Large strong Americano come to me! 

Over the past few days, I have noticed a couple of little twinges of different things which I'm not sure about. Although the steroid taste has finally gone, my tastebuds seem to have changed slightly. My sense of taste feel like they have diminished a bit. Having a strongly flavoured chilli (I am cooking again as well) the other night, and it tasted a bit bland, whereas Tony thought it was fine. The only thing I can really taste are strong mints. I hope this doesn't last. Food won't be the same if this keeps up. 

My legs are achy as well. This used to be a thing which happened after walking too far or exercising. But at the moment, this is a constant. And worse when I am trying to get to sleep (one of the factors of not getting to sleep at night). Sitting, standing or lying down, this doesn't matter. Again, this had better not last. I didn't sign up for that when I said yes to doing this treatment. It's meant to be helping the legs work properly again, not make them worse. 

The next one, I'm not sure is happening because of the treatment, or I'm getting old. My eye sight has deteriorated in a huge way since the start of the treatment. It had deteriorated a bit before I started, but it's got so bad now, I'm using a cheap pair of Boots Chemist readers to read books and my iPad. I have to turn my phone to landscape to read things on it. Am sure this is age... 

Today wasn't as bad as the last two days, and I do actually feel really good. I don't feel sick. I don't feel like I can't travel, go near people who are ill, eat potentially listeria infected food. I feel like myself. And I forget I'm going to be like this for a few months. At least the food diet should get better in the next couple of weeks. But I don't look or feel sick. I even went as far to offer to travel for work next week, then realised there's a reason I'm not meant to. And was reminded of this by my Project Manager. He's got my back, even if I don't. 

I spoke to the M.S. clinic last week. I am going in to have a chest x-ray this week. Once we have the results from this, and fingers crossed the pneumonia is a distant memory, I can get the last two days of treatment. So keep everything crossed for me I can continue on with these and the last week of no coffee has been worth it. 

So there it is, I'm back, I'm happy, but I am still infectious; infectable?  

Screeching Halt

This time last week I was in A&E at Charing Cross Hospital. During the night I had started coughing and once there was blood in it, I knew I was in trouble. So off to the ED we went with the hope it wasn't anything too serious, and I could continue on with the treatment once the doctors had figured out what was wrong. In all honesty, I knew it was unlikely I was going to be able to continue with the treatment. 

I had been feeling pretty good up until this stage and was pleased with my progression through the treatment. 

After a few hours in ED room 8 I was transferred over to the Acute Awareness Unit. I was being admitted and my treatment was being stopped. I was met there by Doctor Thomas and after having a quick discussion, taken to my room. 

The blood tests which had been done in the Emergency Department had already loaded on to my records, which I have access to. PatientKnowsBest  This is a great tool and means I have immediate access to my records. But I had to show Dr Thomas my lymphocyte count, which was already 0. However, the result from my chest x-ray had come back and he said it looked like an Upper respiratory infection. Great. There goes treatment.

I was admitted and administered with pills galore. Not only the medication I had been taking with the Lemtrada treatment, but also another three types including penicillin. So there's now antiviral, antibacterial and two antibiotics. 

They finally concluded I had pneumonia, but also need to see a speech and language therapist to figure out why i don't swallow properly. Well, I do, I just sometimes choke on my own saliva. I was discharged with promises I will go back if I get any worse, and see the therapist. 

The problem is with this, is even with all the drugs, my immune system is unable to fight it. The medication needs to do ALL the work. Which means it's going to take a bit longer to recover from this than usual. 

I  have now been home for five days and spent a lot of the time sleeping and binge watching TV. This was already expected from the infusion but I may not be as bad as I would have been if I had completed the five days. I won't be able to continue on with it, until the pneumonia clears up and I am healthy again. I haven't been able to speak to the MS clinic yet to figure out what next. And if I need to start from scratch. I hope since my lymphocytes were at 0 when all this started it's actually going to have a good outcome. But only they can tell me this. 

 I don't feel sick and I don't look sick apparently. But I am still sick and need to stay away from any possible risks of infection from anything else. I am on rest this week, which I am doing. I need to recover from this and find out what next. But I am good. I was devastated last week, but I am okay now. I only hope I can keep infections at bay and recover from the pneumonia quickly. 

Half way through!

Great start to today. No issues getting the cannula in. Although, I think it helped having kept my arm really warm and buffed up this morning. A bit of a hot coffee cup and rubbing seems to have helped. 

It’s a good group of people in here. It helps we are all in the same boat and have the same disease. One of the girls is from Melbourne now living over here! Go figure! But it’s nice exchanging stories and comparing our war wounds! Because this is a bit of a war. It’s our immune system being the baddie and the rest of the body being the friendlies. Unfortunately, in our scenario, up until now the baddies have been winning. Until now. This is going to help win the war. We’ll be in the trenches, fighting for it this week and the next few in recovery. But it’s a fight I’m willing to give all I can with. 

I’m feeling mildly flushed today though. So I think the steroids are making themselves known. And the Lemtrada is taking it’s toll.  Today went a lot quicker than the other two days. Getting used to the drill now and know when and what to expect. 

I believe the next two days are going to be the hardest with the fatigue as today was the last of the steroids. Boo. Although, it does mean no more metallic taste and the days will be over sooner. 

I still had a bit of energy after today’s course and even managed to wander across the road, from the hotel, without Tony. Not sure if that will stick the next two days. 

Hand wash and antibacterial wipes are our best friends right now. Keeping everything clean and bacteria free is the number one priority now. I’ve also been told cold washes are not good for keeping bacteria from staying in clothes. So hot washes it is. Who knew!? 

Anyway, I’m now over half way through. 60% done. Am impressed I still have energy and although couldn’t do a run today, would be happy to do a long walk. Probably not the best of ideas with a compromised immune system, but nice to know i could if I wasn’t so compromised. Be interesting to see what the blood results looks like Friday. 

Onwards and upwards! 

J

Tough day

Today has been a tough day! Woke up feeling somewhat hungover, without the benefit of drinking too much to get that way. #disappointing. 

We managed to get off to an early start this morning, although getting the cannula in was another disaster. First in my hand which hurt like hades! Took that out then proceeded to go up the arm a bit! This then was sore when the steroids were going in. There has been relief since. The nurses did contemplate taking it out but decided against it as my veins are so bad.   I’m the bad vein girl!! It improved after a second flush and Lemtrada went in. 

So another quiet day of the infusion. Although my day was brightened mid afternoon with a visit from a wonderful girlfriend bearing goodies for me. And the cutest little pillow! Thanks Jayne. You definitely brightened my day! 

It was an earlier finish today. Was all done and dusted by 15:45 and felt really good. The nurse asked if they should leave the cannula in, but after the issues I had with it I felt I’d rather theyvtry again with a better site for day three. 

Had a bit of a treat with Thai for dinner - lots of chilli. No ill effects after today’s treatment. Actually had a bit of energy and no headache or dry horrors! 

Bring on day three. 

T Day

It’s Day One. It’s finally here and I was nervous as anything. 

We woke up and got ready and packed my day pack with all the necessities; book, iPad, headphones, water bottle, snacks, colouring book and pens and the very important strong no mints for the steroid taste! 

On getting to Charing Cross we were greeted by a nurse and told we couldn’t go in as the room was still locked and they were understaffed and waiting on additional nurses to turn up. Bad start. 

Second bad start was not finding any of my veins to get into. And this after drinking copious amounts of water for the past couple of days. I ended up hiding in the bathroom to do a few wall push ups to see if that helped. It worked! 

Blood tests done and I was ready. A saline push then the hour long steroid. Steroid finally went in about 10:45. Another saline wash and finally the grail of drugs! The Lemtrada. Four hours to sit and do nothing. This went on just after 12. 

My headphones were a godsend as it meant I could block out bad day time TV, including Neighbours, Home and Away and TV movies! 

It gets a bit much after a while, doing nothing. Finding things to keep you occupied and entertained. A bit like flying for long periods of time. You think I would be used to that by now. 

The metallic steroid taste was pretty gross. Thank goodness there’s only two more days of this. 

The nurses have been brilliant and easy going. They must be so used to people on R1 D1 not knowing what to expect. I almost got my first blood pressure spot on. It was 122/74. I guessed it to be 120/73. Not far off. I finished on 111/65. Still in range but a lot lower than the usual. 

I started my lymphocyte count on 1.5. It’s dropped from January, which is a little strange. Be interesting to see what Day 2 is like. 

So the listeria diet started hardcore today! Fish and chips for dinner since we are in a hotel and hard to figure out what is safe and not. And it’s even more stricter than the pregnancy diet. :( very hard core. 

The amount of people who have messaged me on Facebook or messages is amazing. My heart is overflowing with the amazing support I have around me. And my husband, Tony, the support and city driving you are doing is amazing! Thank you from the bottom of my heart. 

Bring on day 2. 

Automatic reply is on!

Less than 72 hours to go. 

Eek! I have just put my out of office on for work. This is it. I'm now in the final countdown til T Day > Treatment Day. This has come around so quickly and I've realised how nervous I am. This is getting a little bit real. 

I have a bag packed of all my snacks, creams and drugs. I've been warned the itchiness is severe for some people during the infusion. Headaches can be terrible. So the strong paracetamol is packed, as are soothing creams - Aloe Vera and Eurax. Water bottle will go in after I have finished it. 

Next to pack is the bags. Apparently the comfier the better. So a lot of loose clothes and runners. No make up required. I feel like i'm making a list to go on holiday. If only it was. I do have a couple of things planned to look forward to. This is a good thing. 

The nerves and anxiousness with this have prompted a bout of emotional eating. Not a great idea, when I'm about to be pumped full of high dosage steroids. I'm counting on getting one of the not so common side effects - overactive thyroid! I will be in trouble if it goes the completely opposite way though. So between the emotional eating, steroids and under-active thyroid (if it happens), I could be buying a whole new wardrobe! I may need to warn the finance manager now. 

But it's here. I am eager to get through this next two weeks. A week of infusion, then a week of fatigue while my immune system recovers. So for a bit of a information session, at the moment my lymphocyte count can be anywhere between 1.9 - 2.1. This is normal for a person. The normal range is between 1.1 - 3.6. By next Friday, my count will be down to around 0.1. Very, very low. 

The second week will be sleep. I'm told the fatigue is extreme as my body tries to rejuvenate the cells. I don't think i'll be getting my daily coffee in a hurry. So if you're in the neighbourhood and are feeling as fit as a fiddle, please feel free to drop by, coffee in hand. I will reward you with a massive smile and hug! If you want to Skype, Facetime, call me that week, I would love to chat, although I can't promise how awake I will be. 

Anyway - I'm off to do some more packing and spend some quality time with my husband while I can. 

Take it easy folks, and I will log in again after the first day! 

Jodi

160 hours to go

Seven Days post treatment

This time next week I would have been at the M.S. clinic for nearly eight hours already. This has come up so fast.  I have been so busy with work and other things this has really crept up on me. A part of me is dreading this. My anxiety levels have slowly crept up on this along with the treatment. A few weeks ago, I was fine. I was thinking 'I've got this'. Now it's less than a week away and my nerves have started to fray. It probably hasn't been helped by the fact I am no longer on any medication for the M.S. 

Yesterday I started on the CBD oil. Cannabis oil, which you can get at the Health Food shops in the UK. Without the bad stuff (or good stuff, some would say) in it. I don't feel any different, but today the fatigue isn't the same as it usually is. So I am hoping it is helping. It's put me out of synch, not having the twice daily pill. 

Trying to organise the next eight weeks for work and my travel, has been tough this morning. I am convinced I am going to be okay after the first couple of weeks. I know this is restarting my immune system. I know I am going be tired the first week after. The week after that I am planning on being back at my desk, working. I am lucky enough to work from home, which I have in my favour, recovery wise. I won't need to leave the house. I can recover at my desk for the following three weeks. Then I am back to travelling at the end of April. I will spend Easter at home. I worry I am pushing it, knowing the effects I could possibly suffer. At the same time, I feel if I start to worry and think like this, I will suffer. Power of positive thinking. I can do this. I will do this. If not, I will do what I have always done. I will push through it. I may complain a little bit, mainly to Tony and any friend and family who will listen. You can't tell me to suck it up, I have a really good excuse. 😅

It only dawned on me over the weekend (while stocking up on snacks and breakfast items), I am not paying for this. It is all part of the NHS and the care it provides for tax payers. As much as the NHS gets a bad reputation with the amount of red tape you have to get through to be in the system. Also the waiting lists and some forms of care, I can't in good conscience say anything bad about them. For the last three years I have been paying £16 every three months for my medication. Compare this to the $60 a month I was paying in Australia, and goodness knows what the cost is in New Zealand, America and other parts of the world. I am lucky I am having this treatment here. It is a good thing. I don't even want to contemplate how much it would have cost otherwise. Would I have paid for it? Would I have suffered through, continuing with the existing medication? It is not a question I have to answer, but is one I have thought of. What would my options have been? 

There are other drugs which can be taken for progressive M.S. After 15 years since my diagnosis, I am one of the lucky ones. I have been told this by a couple of neurologists and nurses. I haven't progressed as fast or as much as others. Most people who are diagnosed with this 'monster', by now, are a lot worse than I am. I think most of my diagnosis is hidden. I struggle with my walking a lot more now than I did, although I still don't use the cane I have as much as maybe I should. I do try to be in bed early, and have quiet weekends. It is the plan at least. Sometimes this doesn't happen.  Maybe it will tonight. 

The last one

Eleven days pre-treatment:

Last night at dinner was a bit of a momentous occasion for me. I took, what I hope to be, my last ever oral pill for the MS. 
My little blue pill which has been part of my life, twice a day for the past seven years, is now a thing of the past. This is it. The real countdown has now begun. it didn't seem so real before now. Yes, I have been trying to be careful with my food and the 'pregnancy' diet to avoid getting listeria. I have been attempting to keep everything around me sanitised to the point of OCD (which I am very far from). 

This little pill is the reality starting to kick in for me now. I don't know how long it will take to leave my system, or how I am going to be after not having it for a couple of days. But it's gone. It has been such an intrinsic part of my world, and a natural one, it feels strange not having to make sure I take it with dinner or breakfast.  Or having to have protein with it. It feels liberating! Who knew!?

So 11 days left before i lose my immune system for a while. I have been reading up on the lymphocyte count and the difference between B and T cells tonight. It's all rather scientific, which my brain doesn't do well.  My current count according to my last blood test was 1.9 (where the normal range is between 1.1 - 3.6). With the Lemtrada treatment this can drop as low 0.25. So the immune system - severely compromised. Contracting a simple common cold has the potential to be devastating for me. All I ask, if you want to visit, please don't bring any bugs with you. Tony has been told if he gets sick from being at work, he will need to stay somewhere else until he is fully recovered. 

It will take about a month for my count to be back within a marginally safe range. But like M.S., this is different person to person. 

Wish me luck! I may share some of the side effects I've been reading about next 😏😆

Take it easy. 
J

A diet to kill me!

Day 8 - 21 days til treatment! 

Kill me! Kill me now! I'm really struggling on this Listeria diet... what on earth do pregnant woman eat?? I can't have anything I really love. My steak has to be cooked to a crisp, I can't eat shellfish or soft cheese!!! Apparently no delicatessen food either. So no chorizo, salami or hummus. My favourite lunch food is off the cards. Ryvita with cottage cheese and ham is no longer part of my lunchtime routine. My soft poached eggs have been taken away from me.  Everything has to be cooked... I have another seven weeks, at least, of this. Please someone don't disappoint me tomorrow and tell me I can't have ham and cheese toasted sandwiches either. 
I have a new found respect for all mothers and pregnant women now. What did you eat? I'm in complete awe of you doing this for nine months. It is not a reason I never had children, but now knowing how hard it is, it really could have been a subconscious mitigating factor. 
I have one saving grace though, I can still have wine and whisky. So again, hats off to all pregnant women. 
There is something to be said for not being able to do this, for what I'm told is longer than nine months. The realisation I am doing this to stay healthy for this treatment is a bit startling. And making it so very real. If my immune system is compromised prior, I will need to filled with antibiotics before they can do anything. Something I really want to avoid, as the drugs going in to my system are pretty horrific already. Steroids and an immune system killer. I really want to avoid anything else if I can. 
It is hard to believe I am only three weeks away from being a pin cushion for five days. This is looming up fast and I'm not quite sure I'm okay with it. There are really conflicted feelings about it. On one hand, I really want to get this done and dusted, so I can get on with things. I'm putting so much on hold until I get through the treatment and recovery time. Going away anywhere is going to be minimal until I can take stock of my recovery. Although we have booked a few days over my birthday in May, I'm not sure how well I will travel. I am hoping seven weeks post treatment I should be fine. I'm really hoping three weeks post treatment I will fine. 
On the other hand, I'm terrified it's all going to go to custard and I'm going to suffer tremendously. Some of the side-effects of this have left me reaching for the wine and whisky bottles. They are low odds, and because my M.S. is relatively moderate, I've been told I have a better chance of not suffering most of these. This is worse case scenario, but terrifying none-the-less.  But I am told the chances of the M.S getting better are higher than these side effects. So it's the risk I take. 
Some of the more common ones during the treatment can be dealt with. I've been instructed by people who have already been through this to take plenty of Aloe Vera, antihistamines and paracetamol. 
They say Knowledge is Power, so at least I am going in to this forewarned. But I wonder what is worse. Knowing all this, or is ignorance really bliss? 
I'm off to cook a listeria friendly dinner of chicken stir fry (with all my vegetables well washed, and because it's chicken - well cooked). 

Happy reading! 

Countdown is really on.

It is Day Two. To be exact, 26 days to go before I start the Lemtrada treatment. The post I shared yesterday was Day One, in case you missed it. 

I am not worried about the treatment itself. I'm worried about the side effects. I'm concerned the days after are going to be the hardest. I can't worry about the treatment, as it's out of my control. I don't know how my body is going to react to this, but I can control how it feels before hand. 

This morning I woke up with the most energy I have had in months. Unfortunately, this new found energy didn't go into exercise, but went in to work. Not such a bad thing. But the new healthy life style didn't really get a look in today -  oops. Maybe dinner time. I have managed to get some steps in. Although it wasn't through walking, just the usual dancing around the living room to an upbeat playlist which gets my day (and my brain) going. A bit of 90s dance going in the background as I write this. A little bit of C&C Music Factory for all those 90s lovers...

Being in control and knowing what will happen next is something I am sure most people can relate to. I am one of those planners. I like to know what's happening, and like to be able to plan ahead. Letting things "happen" is not something I like. Although I like the idea of letting it all happen, if I had to actually do it, I would probably fall apart. I'm an organiser, a planner. And not knowing how I am going to be affected by this medication is messing with my inner control freak. I don't like it. But I can't control it. What I can control is how I react to it mentally and be able to do as much as I can to avoid getting sick before and afterwards. The reaction to the drug is going to have to go with the flow... my inner control freak just screamed in agony with me admitting this!  

I watched a #Melrobbins clip yesterday about being able to solve problems. This also goes towards the ideas of control. Change what you can, and don't stress about the ones you can't.  Wise words, but who listens to wise words? I'm trying to. I really am. But when things go to custard, how often to we remind ourselves of these wise words. Whether by Mel or the Dalai Lama. Can I get you all to remind me of these when I'm suffering from the steroid crash and lack of energy levels? Say wise words and I'll probably throw something at you. Ha! 

I can be prepared for the days of infusion. This isn't an issue. I can have things to do, food, water, my beloved Precious (the iPad) and books. It will be like my own little holiday, without the sun, sand and sea. I am currently trying to teach myself how to crochet! Trying, being the operative word in that sentence. Something additional to do when I'm sitting for hours on end in the ward at the hospital. Oh the control! I may even take my work laptop with me. 

Luckily, I won't be alone in the ward, as other M.S. patients will be getting the same treatment as me in the same week.  We will all be in the same boat. At least we can share stories and experiences. Having people who have been through this is an absolute life line, however. Knowing what they have gone through definitely helps. Even the advice they have shared on what to take in and what the process is a godsend. The nurses haven't been as generous sharers on this. But they have a lot of patients to look after, so I'm guessing this isn't a priority. 

Day one... a patient's diary.

It's been a while. Actually, it's been longer than a while. And whilst I may have been in touch with some of you, not all of you know what's going on. And for my newer contacts, it's not been a while at all. 

In 27 days, 13 hours and 44 minutes, I will be checking in to Charing Cross hospital, here in London as a day patient. I will do this every day for five days. The reason behind this, I will be starting on a treatment for my M.S., which will hopefully, give me a new lease on life. 

Back in March 2017, I had a really bad relapse after moving house. Again, after moving house in May last year (2018) I had another one. Yes, you got it, I'm never moving again! (I know this idea makes my UK friends happy, and my antipodean ones, not so happy). Similar issues, with my legs having lost pretty much all motivation to feel. I could still move them, but what I had was dead leg. You know the feeling you get when you sit on them too long, and you've lost all feeling to them. Yeah, that's the one... in both legs. The second relapse has been the longest, and in all honesty, I still haven't quite recovered. So my Neurologist, in all his wisdom, suggested a new treatment. 

So it comes down to this. Monday 25 March, I will be going to get this new treatment. But I want to document everything which happens leading up to, during and the effects afterwards. There are others out there who have done this. They have even recorded videos of what they have gone through. I'm more of a writer. Although if it comes down to not having any energy to write at some stage, then I'll dictate to the husband and he can type it up. 

The treatment: Lemtrada. It used to be called Campath, and is a treatment used for Leukemia. On the first morning, as I understand it, I will be tested for any infections. If there's any infections, I will be treated with anti-biotics. Fingers crossed this doesn't happen. Then, it will be on to the infusion of steroids! After this, it's on to the good stuff, which is supposed to be killing off my immune system, via an infusion. 

Because M.S. is an auto-immune disease, my immune system attacks itself. The idea behind Lemtrada is it will reduce my immune system and hope it bounces back without it wanting to attack itself again and again. 

Time: The initial treatment is for five days. Then for three days the following year. Fingers, eyes, legs and everything else crossed, this will be enough and my self-attacking immune system slows right down on the inside front!  If not, there is a third year to look forward to, if this doesn't work. 

I have been told by the nurses at the hospital and all the people on the Facebook group I am in, I need to start on the listeria diet. Although the timeline for this one is a little hazy. So I've started already. Basically, the same as the 'pregnancy' diet to avoid any chance of listeria infection. Trying to stay away from anyone with a cold, flu or any other person/place where airborne viruses are rampant. Unfortunately, work won't quite allow that, so I have loaded up on Anti-bacterial hand wash, wipes and any thing else I can get my now, very clean hands on.  I'm wiping down the keyboard and desk now. Handles, phones and anything else which may have been infected. Overkill? Quite possibly. And after a couple of days of this, I know I'm going to be totally over it. Do I have to give up wine?? 

So Day One is nearly over. I haven't been very good. I should be eating well and staying active. Am sure Day Two will be better.