Category: ms

Lemtrada: Round 2 Day 1

Well yesterday, I was admitted to Salford Royal for day one of the second round of Lemtrada.

Once I’d managed to get on the ward which is a different one to last year and like Fort Knox, I was showed to my bed. Unlike last year, I’m on a general neurology ward, with a lot of long term patients. Dave was asked to leave until visiting hours at 2pm as it’s an all female ward and at that time of morning people are just getting up and being cleaned etc. So I was taken aback slightly as I thought I knew what to expect but that wasn’t meant to be!

If you’ve followed my whole Lemtrada journey so far, you may remember that last year I had no end of problems with my blood tests and cannula. My veins were pretty deep, the first attempt blew and I had a massive blood bruise on my arm, the first one that actually made it in wasn’t flushing properly. When my blood’s were taken the haemolised (clot) before they got to the lab for analysis so I needed more taken and I never actually ended up getting hooked up until about 5 ish.

Yesterday was far more successful. Alex was the man and got my cannula in first attempt and it’s in a really good, non-intrusive place too. It didn’t particularly hurt either so hopefully that fear is over!

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Waiting for lunch I had a catch-up on Sunday night’s Love Island and did my old favourite habit of binge watching Friends, despite the fact I have loads of other stuff I need to watch!

After lunch I finally got hooked up at 2 ish. Dave re-visited and appeared with salt and vinegar pringles and chocolate, because this, is what lunch was:

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Yes, you are looking at mash, carrots and a plain omlette. The veggie options here don’t leave much to be desired to say the VERY least. It went down, but only because I was so damn hungry!

The first part of the infusion was the steroids. I immediately reacted to this with a hint of a rash appearing along with a tight chest. That awful bitter taste like cheap bad tonic (the 39p stuff in plastic bottles!) re-appeared as if on cue within 10 minutes. Kat is a rockstar though and had bought me A LOT of mint tic tacs to take the edge off. Combined with the pringles it wasn’t so bad.

Like last year, I’m downing water like it’s going out of fashion, but my bladder fully behaved itself and my toilet trip count was down from last year’s 157 on day one to about 10 this year!

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Once you get put onto the Lemtrada infusion they observe you like crazy to start off. For the first two hours they check your temperature, heart rate and blood pressure every 30 minutes. Then you have one an hour later, one two hours later and final one four hours later. Because of the time that my infusions started, my last observation was a late one at 22.45, which I was pretty incoherent for as I was so damn tired!

During my infusion I felt awful. Achey hips, blinding head ache, so so hot (unberably so) and just wanted to sleep. At best you can only doze as you’re constantly being checked on and you’d be surprised just how much is going on around you.

Dinner time came before my final infusion had finished…Dave was highly amused by “orange juice” starter. Can’t understand why. It was a massive treat after drinking so much water! And now ladies and gentleman, I present to you my main course…

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Here, you are looking at saute potatoes, green peas and a cheesy pasty. Which doesn’t sound too bad, albeit a bit yellow. But the pasty wasn’t Carr’s or Galloway’s and quite frankly did not cut the mustard for this plastic Northerner!

Infusion finally finished about 8.30 and the relief to be detached from Bleepy McBleeperson was huge. A couple of hours after, I finally cooled down, my headache alleviated and I managed to have a snooze. I obviously woke up in time for Love Island and my favourite meal of the hospital day – TEA AND TOAST!!!

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Final observations for the day all turned out good (apart from my blood sugar, but I’m pretty sure that was the fault of the orange juice and tic tacs!)

My lovely Reiki friends sent me some healing throughout the day which I’m so so grateful for, and I finished off my day by “reiki-ing”myself to sleep.

I had a pretty good night and have woken up feeling pretty good this morning.

On we go!

Relapse or not?

The days you wake up, do a quick body scan and realise that you’re ‘you on your best day,” are truly joyous. The trouble is, it’s a precarious balance. Any minute it could come crashing down.

On your “best day” it’s not abnormal to get giddy about how much you can do and then push your luck just that bit too far. Like I did today. I usually do use my day off in the week to rest and recover but today ended up being busier than I like it to be. I had a couple of places I needed to visit as well as getting my bloods done. The urgency is in part down to being pretty busy this upcoming weekend, and partly knowing I’ll be in hospital 12 days from now. But now I’m paying for it. It’s 6.30 on a Wednesday night and I’m shattered!

I’ve been thinking a lot lately about the fact that I don’t think I’ve had any relapses since I’ve been diagnosed with MS. At least not a debilitating one. Yet I feel like I’ve been feeling progressively worse, physically. As my white blood cells still aren’t quite up to the bottom end of normal, I’ve been assured by a nurse that I can’t possible be having a relapse. So why do I feel so damn terrible?

This picture literally means nothing. It was just pretty and I needed one. And it’s a nerve.

It’s the aching more than anything. It just doesn’t seem to take a lot to make me feel like I’ve done a couple of rounds with Mike Tyson. And when I say “not a lot” in healthy person terms, it really is nothing. And I don’t know why. Sometimes I wonder if the brain really is so amazing that I DID feel this terrible prior to diagnosis, but in the absence of an explanation, or indeed in fear of it, I just suppressed anything I couldn’t explain.

It seems plausible that perhaps every way that I’m feeling terrible at the moment is something that I’ve experienced before, back when I was blissfully unaware that I was living with MS. But I found a different excuse that was temporary after it vanished. The reason everything is flaring up is that everyday my body is not only existing but it’s fighting off the symptoms and it’s fighting to build my immune system back up. That’s gotta be exhausting. Right?

I just feel like since Lemtrada, I haven’t been quite right. It’s not bad enough to put me off going for my second round. I keep trying to trust the process. That it’s a two year treatment that I’m only halfway through. It goes some way to appease me but then there’s this little niggling thought that there’s something more sinister going on.

I feel so confused that I’ve started to track my symptoms through an app called SymTrac. This doesn’t feel like something I want to use long term though. It’s making me think constantly about what pain I am and am not in. I’m all too aware of how I feel right now, and that’s not good for me.

Any other Lemmies out there with words for advice, reassurance or comfort? Or anyone in the know for that matter.

We go again…

Many followers to this blog may know that on 11th June it will be a year since I had the first round of Lemtrada. That time has flown. I honestly can’t believe it!

That means I must be due to head in for round two. And I can confirm that on Friday I got the call to tell me I’m due for my second round on 17th June. Nothing like a good bit of notice eh 😉

So two weeks from today, I’ll be packing my bag for this year’s treatment.

A quick reminder of last year’s treatment – I went through five days of infusion based medication. Three days with steroid and two days without. The drug wiped out the part of my immune system that attacks my nerves and causes the demyelination we know as MS.

Gonna be making friends with Bleepy McBleeperson again in the not too distant future…

This year, it differs slightly. I’m only in for three days for the same treatment. I’m not 100% sure if I get less of the drug or if I get more per infusion but I’m sure I’ll find out!

So a short, but sweet update!

It’s a weight off the shoulders. If you’ve read this blog from whilst I was being diagnosed you’ll know I’m a planner and totally hate the unknown or a lack of plan! It’s made me completely irritable and irrational. But hopefully I can start to see past this treatment now, and onto a life where MS is at the bottom of the list of things I think about. And not at the top.

The Impact of MS on Mental Health

It’s Mental Health Awareness Week and although I have talked about MS and depression before, it feels right to talk about it again this week. We also know I like to set the record straight on how soap operas deal with MS, and the current storyline in EastEnders is no exception (I’ll come back to this in a bit).

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It’s not unusual to experience some kind of impact on your mental health when diagnosed with MS. There are a variety of reasons that it might happen as well, which can sometimes be difficult to get your head around. It’s a bit chicken and egg. “Am I feeling down because I’ve got MS, or is MS making me feel down.” Let me explain.
You can categorise the reasons for MS related mental health problems. They are either directly or indirectly related to MS.
Directly related symptoms include nerve damage which means the wrong emotional signals are going to your brain. This means that you could feel sad for absolutely no reason whatsoever. It also includes the psychological reaction to MS. You might feel grief, anger, resentment and uncertainty to name just a few things. Not related directly to MS include factors such as your personality type. That is to say that certain emotional reactions are just who you are. You may also have had depression regardless of MS. The same goes for stress and anxiety. Lastly, you might experience mental health problems as a side-effect of medication.
Roughly 50% of people with MS suffer from depression at some point, but as you can see, the reason behind it can vary greatly. That means that treating it can too. We all need something different. For some people, that’s talking-therapies or medication. For others that’s taking some time out, doing something that sparks you joy.
There’s another symptom of MS called “emotional lability” or “emotionalism,” which is something that I have. If you have either of these things, you’ll find that you have disproportionate or irrational emotional reactions to situations. Something really small might happen that you display excessive amounts of frustration or anger towards. You might laugh inappropriately. Sometimes I cry with laughter then switch to sobbing my heart out. I feel overcome with sadness and I have no idea why.
Prior to being diagnosed with MS, I considered myself to have fairly sound mental health. Sure, I had times when I got stressed and I had periods where I felt down, but for the most part I’d describe myself as a cheerful soul. I rarely felt life get on top of me. I never experienced the “black cloud” over my head.
The first experience I had of “not being ok” was during the period of awaiting diagnosis. The waiting game was horrible. I felt constantly sick. That knot in my stomach. When were they going to tell me what was wrong with me? I felt forgotten. Abandoned. Lost in the system. Much as I feared the inevitable outcome, I wanted to be put out of the torturous game of waiting. Every time my phone rang I wondered if it would be the hospital confirming my fate. I was OBSESSED with the arrival of the postman for the arrival of letters from hospital, with some hint of answers.
And then I got my answers. I won’t lie, I experienced relief. And then I just powered on through. Like nothing had changed, when the reality was, it’s probably the most significant thing that has ever happened to me. I maintained a façade of coping. Feeling ok with it. And deep down I really wasn’t. Everyone kept telling me I was being strong. And in my head, strong equated to still smiling and laughing. Being ok. Continuing to breeze through life. So that’s what I did.
I went through chemotherapy in June 2018 to hopefully halt (or at least dramatically slow down) the progression of my MS. I took six weeks off work to recover and towards the end of that, I experienced my first brush with anxiety. The thought of going back to work made me feel terrified. I didn’t know how I was going to react. I didn’t know how others were going to react to me. I was genuinely scared. This was when I first started receiving Reiki, and to say it helped is an understatement.
Somewhere along the line it all got a bit too much and I finally allowed myself to feel everything that I had been bottling up. I cried and cried. I felt grief and mourned for the good health that I previously had. I felt the guilt of being a burden to work and colleagues, my friends, family and more than anybody, Dave. This wasn’t the life he signed up for. I felt scared for the future. I was in pain and I was furious with the injustice of me of all people having this condition. I envied people that got ill, but made a full recovery. I shut myself off, didn’t feel like going out and spent a lot of time either sleeping or just sat, staring into space. I lost my get-up and go. It felt dark. I was still functioning but I felt numb. I was doing nothing more than going through the motions.

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One day, I had an appointment with one of the MS Nurses, and had a real download of how I was feeling. She’s not a counsellor so she couldn’t help in that respect but she did come up with a magic pill. She told me it would help to ease the physical pain I was in, but would also help to lift my spirits a bit. And it really has. I know when I’ve not taken it, that’s for sure.
Now, I feel that I’m out the other side of that dark time. I still have the odd day where the realisation of the condition that I have hits me like a ton of bricks and I feel like crap. But it’s becoming more and more infrequent. I now accept that some days I’m going to be fed up. But I do what I can to find escapism, whether that be in a book, a TV series, hanging out with Poppy or finding something else that sparks happiness in me.
There’s one other factor that can affect depression in MS patients that I have deliberately held back as I want to talk about it in relation to EastEnders. And that’s that there’s other stuff going on in your life unrelated to MS that’s causing your mental ill-health. I’m hazy on the details as I don’t watch it, so I’m only telling it as I understand it, but in a current storyline, a character with MS takes her own life. The soap describes the storyline as wanting to “explore the impact of MS on mental health.”
I think it’s great that they’re drawing attention to the impact that MS has on your emotional wellbeing. I’ve already said that at least half of people with MS will experience some form of mental ill-health. So why did I say at the start of this blog that I’m unhappy about it?

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Because it’s extreme. Irresponsible even, with 100 people in the UK being diagnosed with MS each week. What kind of message is it sending out about an already misunderstood condition? It’s terrifying enough without a suicide storyline happening in the background. If your only knowledge of MS is someone who is impacted by it so badly that they choose to take their own life, it doesn’t bode well. You don’t know at that point that very few people with MS are permanently confined to a wheelchair. Having said that, even with that knowledge it doesn’t mean that we don’t fear that we might just be one of the unlucky ones. So please don’t scare the living shit out of us unnecessarily.
The thing is, this character has a lot of other stuff going on outside of their MS, as well as their MS being a stage that many will be fortunate enough to never reach. I just don’t think it’s a realistic representation of how MS can affect people mentally. It’s the most extreme example of it. I’m not saying it doesn’t happen. It’s disrespectful to those that do suffer this badly to say it doesn’t. All I’m saying is it’s not the norm. What scares me is that someone newly diagnosed, that doesn’t yet know much about the condition see’s it. What scares me is that the message that sticks around from this will be “person with MS kills themselves because of how horrible MS is.” And that’s not a true reflection on the reality.

Stumbling in Heels

When I first moved up North, the fact that I virtually lived in my stilletos, and also am from Essex, was a running joke. I protested on multiple occasions that you could take the girl out of Essex, but never out of her high heels!

Somewhere along the line though, it started getting tough. I couldn’t walk in them all day anymore. I was losing my balance. On one night out where I wasn’t even drinking I went flying! I used to salsa dance A LOT, and I suddenly couldn’t dance in heels. Perfectly fine in converse though.

Oddly, I put it down to putting on weight. I thought that having gained weight made it harder for me to walk in heels. It wasn’t that though. It was MS.

These days, you’ll rarely catch me trying to gain an extra couple of inches in height. If I do wear heels now, I’ll definitely suffer for a couple of days after. The bigger problem than the pain is the lack of balance whilst wearing them though Luckily I’m not a party animal so getting glammed up isn’t something I do often anyway. Hell, getting glammed up is so much damn effort that I’m too knackered to go out once I’m done anyway 😂

It’s funny – it’s surprising how exhausting just getting ready can be. I was really suffering a couple of weeks back. I’d worked a full week solid (there were a couple of exceptions that I had agreed to with my flexible working agreement and even though it wiped me out, I’m glad I did it. It proved to me that four long days with a Wednesday off is definitely a great move for me). Every stage of getting ready ended with me needing a sit down. Get up and walk to the bathroom. Come back to my bedroom and need a sit down. Pick some clothes to wear. Have a sit down before putting them on. Put clothes on. Have a sit down. You get the picture…It’s hard when you feel like that. All your limbs start to ache like you’ve just done leg day in the gym.

Mentally, I’m not tired. My body is just exhausted. So I can still function and work etc. Just standing and walking and generally moving about is a hell of a lot of effort. It does start to make you feel a bit fed up. Especially when the weather is as glorious as it has been this weekend so far. And often, any pain and exhaustion you feel is just aggravated by the heat. So would you believe, I’ve spent most of weekend so far indoors which just feels like an epic waste!

Anyway, back to footwear! I’m in desperate need of finding some decent shoes for work which are supportive without looking like a throwback from the 1930s! I can’t live in ballet shoes forever. Although different footwear won’t help MS nerve pain, at least I’m doing as much as I can to prevent other pain that’s unrelated to MS. So if anyone can recommend footwear that looks alright and provides support I’d love to hear your thoughts.

A Week in the Life of an MSer – The Weekend

I decided to write my post about the weekend all as one thing as it’s tough to break down hour by hour.

On Saturday, the weather was awful so we decided to give Poppy’s play date a miss. It was a relief really – as anticipated after the busy week that I’d had, I knew that I would suffer. We went out for breakfast and although I wasn’t suffering any pain, I was conscious of feeling really tired and like my legs weighed a tonne. Most of the time, my fatigue is mostly extreme tiredness, but it’s rare for it to wipe me out physically. But on Saturday it really did, and that carried through into Sunday.

Something else that was up over the weekend, which those closest to me typically bear the brunt of, was my mood swings in full force. When I’m like this, I’ll react disproportionately to the situation. So I go from chilled to raging in about half a second and it will be completely OTT for whatever it is that’s happening. And just as quickly I’m fine again. Luckily Dave is very forgiving of this and takes it in his stride, because if he didn’t I don’t know if we’d still be together.

I also received (another!) letter from the hospital on Saturday just confirming the results of my recent blood tests. My lymphocytes are still on their way up at a good pace (I’m at 0.7 for anyone that’s counting!) and I’m pleased to report that I still don’t have Hepatitis. Another positive is that my Vitamin D levels are ok which means my daily tablets are doing their job!

On Sunday, I don’t think I even dragged myself out of bed until 12 ish – I wasn’t sleeping, I just didn’t feel as though I had the energy or motivation to move. My legs were feeling really cramped too. I couldn’t bend my knees and when I finally did drag myself to the shop to pick a couple of bits up, my sensory overload was at Level 10! Sensory overload has been getting worse for me recently. I have suffered with it at work for a while, when there are too many conversations going on at once, but it has started to get bad in public places where the lights are bright, there are lots of crowds and it’s noisy. Luckily, I ran into a friendly face in the shape and form of Dave’s brother and seeing him just seemed to ground me and bring me back down again.

I got home and after spending an hour relaxing, I got to playing with some essential oils and made some bath salts. I succeeded in my task but an hour later my legs, feet and back were in a lot of pain so I had to sit down and declare the task over!

So, that’s a week in the life of an MSer. Or at least this MSer. If you speak to someone else it could be completely different, and if you caught me on a different week it could be totally different again! This was a very social week by my standards, and that level of activity and socialising always comes back and haunts me a day or two later. Really, my life isn’t that much different to yours. I just ache more easily or tire more easily. I hope this mini-series has provided some insight into what life can be like with MS.

A week in the life of an MSer – Friday

6.55am – Get up

I get up and I’m feeling pretty good! I love a Friday and I’m also going out tonight. I’m ticking something off my bucket list and going to a murder mystery!

8.30am – Call with a colleague

Apparently it’s one of those days. Every other thing Laura says I have to ask her to say again. It’s like my brain and ears refuse to work together. Ears hear it, brain doesn’t process it. It’s horrendous. I come off the phone wondering if I’ve even asked her question…

10.30am – Nystagmus

I hate looking over someone’s shoulder at their laptop. If you want me to look at it, I need to go straight on. Today my nystagmus is playing in full force. What’s one of them? It’s an involuntary flicker in the eye. Sometimes they call it dancing eye. No idea why. It’s not nice! Basically when I look to the left or right for too long, my eyes try and pull back to the centre. It has the impact of making me feel really quite sick! It’s no big deal – nothing MS wise is as long as I know how to adjust and work around it. So with this, I tend to just make sure I’m facing straight on.

3.00pm – Finish work!

I booked a couple of hours off work so I can have a quick nap before going out!

5.30pm – Getting Ready

Just as I get out the shower and I’m all clean, obviously I decide to break into a sweat. I’m absolutely boiling hot and can’t cool down. The knock on effect is I start getting irritable and flustered whilst getting ready. The dress I’m wearing also requires some safety pinning into which Dave has to help with. Part of the less obvious impact that MS has on me includes struggling with really fiddly things. I just have really clumsy hands!

7pm – Arrive for the murder mystery

I’m wearing heels tonight albeit reasonably low ones. When I first moved up north I never used to think twice about wandering around in 4inch heels all day. In fact I used to joke that you can take me out of Essex, but not out my stilletos! Now I can’t do it. Not because of the pain, but because my balance is so shocking. I’ve not even started on the prosecco yet and I can feel myself wobbling about like I’ve had a bottle!

11.30pm Home

I’ve had a fab evening at the murder mystery! I didn’t guess who did it but I really enjoyed it and I laughed more than I have in a very very long time!