Tag: chronic illness

In a funk.

I’m really scared. Scared for the future. I’m going against all my rules feeling like this. I tend to prefer to not dwell on what might happen with the progression of my MS. Because that’s just it. It only ‘might’ happen. There’s just as much a chance that everything will be ok. Which is why I see little point in wasting time worrying about it. That isn’t effective 100% of the time though. Like now for instance.

I’m not really sure what’s triggered it. I returned to work last Monday after six weeks off following my second round of Lemtrada and it was ok. As I’m on a phased return, I worked four hour days last week, today I managed five hours and tomorrow I’m going to try for six. And for the most part, since about two weeks ago I’ve been feeling considerably better than I usually do.

This weather is not helping at all though. Yesterday, I felt terrible. And all I could think about was the fact that I really needed to clean my bath. But I just didn’t have the energy. I could barely stand up for 20 seconds without feeling like I needed to sit down again. And still….”the bath needs cleaning Jo,” said that little voice in my head. All I could think about was that just for once, I’d like my whole bathroom to be clean at the same time. Not just the toilet, or not just the sink, or not just the bath.

But I left it. I just couldn’t do it.

Today. I’ve been into work and had a good day. And although I’ve had a bit of an upset tummy since I got home (this happened last year – damn immune system. It literally reacts to the slightest thing) I’ve been full of energy. To the point that I’ve done a load of washing, changed my sheets, vacuumed and guess what? Cleaned the bathroom! THE WHOLE BATHROOM! I’m sat in my bed now in an attempt to recover from that mass expenditure of energy, but I felt good whilst I was doing it, so I don’t really regret it!

Dave and I are in the process of buying our first home at the moment and it’s really stressful waiting for a completion date. But we’re having ALL the grown-up conversations in the meantime. The current debate is over having, or not having a cleaner. Because I can’t even begin to explain how knackering cleaning that damn bathroom is. And I can’t just wait for a random day where I have energy like I do today. It could be months before this happens again! And actually, even if I do have the energy levels for it, I’d rather use it on going out for a nice walk or on some other quality time with Dave and Poppy.

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 I mean, wouldn’t you rather hang out with these two than clean a bathroom?

It’s conversations like this that are making me fear for the future. I don’t know if it’s the very real responsibility of having a mortgage and desperately trying to find an insurer that will give me a half decent quote on life insurance (*NEWSFLASH*: getting a decent quote with MS – not easy. And don’t even bother with critical illness when you’re already considered critically ill). It could equally be that I read a story about a 46 year old woman who is living in a care home with residents that are mostly in their 80’s and living with dementia*. The system has totally failed her. It’s heartbreaking. She didn’t inflict MS on herself. She didn’t chose to have it. I know that life isn’t fair, but nobody deserves to live how she is living. And it just seems to have hit me that that might become my reality and it scares the living daylights out of me.

I know that right now I’m in a little funk that’s completely normal when you have a degenerative condition such as MS. In a matter of time, whether it’s days or weeks, I’ll snap out of it and start living in the present again. But sometimes I just need to let this emotion come out, rather than bury my head in the sand. The trick is remembering to stand back up and march on.

I’m ok. I really am. On a rational level I know that this is just something I need to go through, but I also know that there’s light on the other side and it’ll be ok.

 

*I didn’t go looking for this story. I tend to avoid it because I know that half the time the media only tells half a story anyway and is meant to sensationalise and make us all worry and fear everything. This was posted in an MS Facebook group though and I guess curiosity got the better of me.

Just when you think things are getting better…

It’s been a couple of weeks since I posted about my experience of Lemtrada Round 2 and now seemed like a good time to check in. Mostly because I’m sat in the doctors waiting room (again) with little else to do.

So last time I wrote, I ‘probably’ had cellulitis and the rash wasn’t abating. Since then I’ve had a course of penicillin which seems to have done the trick on the cellulitis.

Thing was, I was taking 25 tablets a day and quite frankly the thought of another tablet made me want to throw up. So despite the rash, I decided that just for a day I’d knock the anti-histamine and paracetamol on the head. As it turned out, the next day the rash did finally subside so I didn’t bother taking them anymore after that.

On Monday however, my itchy scalp (remember that from last year?) started, so I figured I’d just take another one of the anti-histamines that I was prescribed in hospital (chlorophenamine, which is basically piriton). Within minutes my skin flared up. I broke out in hives almost all over my body. The very same rash I’d had that I was trying to combat.

So the medication I’d been taking to beat the rash was giving it to me. Oh the irony.

Much to the amusement of many of my friends on Facebook, after a bit of googling for home remedies on Tuesday morning, I had a bath in porridge oats. It has anti-inflammatory properties and much to my surprise really helped. Once I was out I slathered myself in what was quite frankly an offensive amount of aloe vera gel and ended up spending the majority of the day sleeping.

By Wednesday, it hadn’t shifted. I popped into a local Pharmacy which suggested trying a different anti-histamine but nothing has changed. If anything it’s got worse.

Overnight has been horrendous. I’ve never sweat or itched more. It’s unbearable and I’ve now given up on waiting for it to ease on its own and am now sat waiting to see the doc.

It’s definitely not been easy this time around.

Lemtrada: Round 2

“Have Lemtrada” they said.

“It’ll make everything better!” they said.

Right now, I think “they’re” big fat liars.

Today has resulted in a full scale pity party. I feel terrible. I’m pissed off that I’ve got MS, I’m pissed off that I’ve had Lemtrada, I’m pissed off that I haven’t stopped feeling lousy for two weeks nearly now. I’m just pissed off.

So, since my last blog last Wednesday, what’s been going on? I was discharged from hospital by about 5pm. I felt pretty chirpy and just generally ok. Legs felt really whoozy though. If you remember, last year, I’d managed to get quite a bit of time off the ward so I’d managed to retain the use of my legs a lot more than this year.

I spent the majority of Thursday sleeping and just generally aching but for the most part I was ok. Friday was reasonably ok too – I even managed to go out for a couple of hours.

Saturday saw me at Poppy’s play date for a couple of hours, then sleeping the effort of that off all day. Same for Sunday, minus a playdate.

Jessie, Poppy and Dexter

Sunday night, I headed back to mine and pretty much, all was about as I’d expected.

So far, my experience was mimicking what had happened last year for the most part.

But then Monday happened.

Following a terrible night sleep, I had to stay awake for my Tesco food shop to be delivered. Given the three hours sleep I’d had, this proved difficult. And the temperature really increased. When my shop did arrive, I was the hottest, sweatiest mess I’ve ever been!

The sheer effort of unloading my food shop made me want to throw up, and I found myself horizontal on the ice cold kitchen floor, desperately trying to feel cooler.

Monday night was another night with very little sleep (but that could have been because I stayed up reading a book).

Tuesday was a terrible day. I felt like I’d been hit by a bus. I barely moved all day but when I did I was seeing stars, dealing with waves of nausea and my heart rate spiking from taking three steps. I wasn’t good. I never felt this bad last year.

I was beginning to realise that perhaps I was lucky last year for Round 1 and how much it had affected me. I admitted defeat and got a taxi back to Dave’s. I couldn’t look after myself. Every effort to just made me feel worse, but I have to eat and stay hydrated.

I want to say that Wednesday was a better day. And in many ways, it was. I didn’t feel as sick or weak. But Dave spotted a patch on my arm that didn’t look like the rest of the Lemtrada rash that was slowly taking over my body. I usually like to give a visual representation but you definitely don’t need to see my rash. Think hives.

The short version is I ended up seeing a Doctor, not from my regular surgery as they close on a Wednesday afternoon (coz people don’t get sick on a Wednesday apparently). He said it looked like I had early onset of cellulitis around the site of my cannula. He prescribed me a course of penicillin to add to my already offensive list of medication.

This was just my 5.30pm meds. I’m taking roughly 24 tablets throughout the day at the moment. My usual regular medication is just two tablets.

Overnight, it definitely hasn’t got worse and it’s less red in colour now and more pink.

Today, I’ve just slept. Then woken up eaten and gone back to sleep. But I’ve got a confession. I have also had a proper wobbly today. A real “why me, why MS” angry strop. I cried my eyes out. I try and avoid doing this too often, because for me personally, it’s counter-productive, but some days putting on a so-called brave face just gets too much. And nobody would blame me for it.

I feel so weak for doing it though. I feel like I’m not living up to how people perceive that I’m coping. In life, it feels like crying is seen as weakness. But I truly believe that strength is not in your reaction, but how you recover. So it’s ok to cry and let it all out.

Or it could be the emotional rollercoaster of steroids and I had no control over it.

In short, whatever I thought I knew about going through Lemtrada has completely reversed. Last year I felt under the weather. This year I can barely move with every limb and joint aching. I have a horrendous rash, I’ve ended up with cellulitis and I can’t stop sweating.

However, if you’re reading this, waiting for Round 2 yourself, please don’t let this scare you. All this proves is that this is so different for everyone and there’s no way of predicting how this will go for you. And please remember. There’s a greater good behind all of this. It could be leading you to a day where you don’t even think about the fact that you have MS.

Lemtrada: Round 2 Day 2

So yesterday was Round 2, Day 2 (aka R2D2)

Woke up after a good night’s sleep and made myself feel a bit more human with a quick shower after breakfast. Feeling a lot better this morning, with the headache finally subsiding and feeling a lot cooler.

Got off to a good start, being hooked up nice and early by 10 o clock.

Infusion mostly all went without a hitch – just had a little doze when I was having the saline flush at the end but woke up back in sweat mode and the rash was starting to make a bit of an appearance. A dose of piriton later and that seems to have subsided but I still feel damn itchy!

So for the most part, it was an uneventful day. Kat (my person that keeps it real does my nails and gives me all the offensive jokes) came to visit me with supplies. Because quite frankly this hospital food ain’t cutting it, as a you can see below…

But Kat the hero arrived with pringles and lindor which made it all better!

So really not much to report apart from I’ve managed to watch an entire season of Friends and finish a book that I’ve been taking ages to get through.

In summary, day 2 went as well as it could do and we’ll keep on powering on for my last day on Wednesday!

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?

Dinah with Karen Taylor in EastEnders
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.