Tag: disease

Jelly Legs and THE RASH

Last night I had a really restless sleep. I know, serves me right for being so cocky about Tuesday night doesn’t it! I was between breaking out in hot sweats and then going freezing all night. My breathing has been a bit shallow too which probably didn’t help either. So I ended up giving in and doing 10 minutes of so on a nebuliser. Must remember that I’m not at home suffering through this. I’m in hospital where they can help! The post nebuliser shakes are awful though. Just weakness like you’d never believe possible.

Feeling sorry for myself this morning

In other news, I no longer need my blood sugar levels testing as I’m no longer on the steroids so that nice alarm clock has gone.

I woke up with THE RASH this morning but that calmed down with my anti-histamines. It’s resurfaced again but I’m going for the “resist the scratch” method of medicating and so far so good.

Nebuliser and a real flush!

On top of all of that I was feeling epically sorry for myself this morning as I learned about “steroid crash”. I couldn’t bloody stop crying could I?

Oh and we can chuck some heartburn in for good measure, yeah?

Ahahh well. We go on! One more infusion to go.

Oddly the time has been flying. I’ve had a steady flow of visitors who have all come bearing food and something to talk about other than infusions and whether I’ve opened my bowels today (no joke, they ask about this probably close to 5 times a day!)

We can only laugh+

Alarm clocks are overrated anyway!

Day 2 started for me at 4.53 am. Or at least that’s when I chose to wake up!

Which I can’t really grumble about since I dropped off at about 11 ish. In a strange bed, sweating like mad with Christ knows what pumping through my system, 6 hours is a good enough achievement for me!

I woke up at around 2 am with my cannulated arm in some serious pain, but just think it was the position of it. I hadn’t kept my arm particularly straight so bending it, right at the point of cannulation wasn’t doing me any favours. A change of its resting place seemed to sort it right out though.

I saw the early rise an opportunity to take advantage of the time difference and spent some time texting my sister who’s in New Zealand. Before I knew it, it was 6.15 and I was ready to drop off again. Unfortunately the night nurse had other ideas and appeared at my bed to give me the greatest wake up call of all time. A blood sugar test which basically feels like you’ve stapled your finger to the table! Never mind. Alarm clocks are for losers anyway.

I text Dave at roughly 9 am after I’d showered, got dressed and eaten breakfast. I didn’t get a response but he did walk through the door at 10am which was a nice surprise.

He’ll claim he’s sick of selfies but really he was upset after being told that he’s an infection risk, and to get off my bed.!

The rest of the day has passed in a bit of a boring blur to be honest. My second lot of tablets made my blood pressure drop so I went really faint. I eventually started infusion at 2pm. The delay happened as I needed to wait 22 hours before I could go again.

Half way point!

I had a face time with mum and dad a little earlier on which was nice. (Mum was showing off her desperado, whilst I was still ploughing through my mammoth effort of water. I’ve got through almost 4 litres today plus a couple of glasses of orange juice and a coffee. On the plus side, toilet trips are at about 87 now so that’s a definite improvement!)

I’m feeling mostly good though except tiredness has hit but can’t drop off yet as I still have another couple of hours of observations to go. My temperature has just started to spike in the last half hour too so they’re keeping a close eye on me.

All in all, a boring day. But as my mum always says, “boring’s good!”

5 more sleeps.

Less than a week to go!

It’s gone so quickly. Hopefully this time next week Day 3 will be complete.

I think I’ve got everything on my “hospital packing” list now, so I’m ready! I had to make sure I had some respectable pyjamas – you honestly don’t realise how much of a slob you are until you need clothes to go into hospital 😂

I’ve been warned about this vile rash that you get as a reaction to the infusion on Day 3 or 4 so I’m loaded up on Eurax cream and Aloe Vera gel. 1 in 10 manage to avoid it, but I’m not counting on me being one of the lucky ones! I’ve had warnings of offensive tastes from the steroids too so I’ve stocked up on mint imperials. I also succumbed to ordering a Love Island water bottle too- hopefully it’ll arrive before I go in. If I’ve got to drink about 10 gallons of water a day, I might as well make it sassy!

This week when asked about how I feel, I’ve answered that I’m just looking forward to a really long break from work and a lot of sleeping. Dave’s fuming – he thinks it’s a huge waste that I’ve been signed off work for the duration of the World Cup as I’m really not a football lover. I can’t even find it in me to be slightly patriotic towards my country. Not a fan.

Yesterday I thought I was going in to see Danny, so I was armed with a tonne of questions. Turns out I was just getting some pre-Lemtrada blood tests. I dunno what they were for exactly but as usual, they took loads.

Having caught up with Danny today I’m feeling really reassured now. He said he’ll pop in to see me next week, so I know I’ll be getting at least one visitor.

As it turns out, they’re really flexible on visitors which is good. I’ve told Kat and Steph to come on Thursday so that they can laugh when the sexy rash appears!

I’ve got more of an idea of what Day One holds now. On Monday, I need to be at Salford Royal for 8 am. They’ll start off with some blood tests and a urine sample followed by sending me off to the cafe for an hour as they wait for the results to come back. Then providing they’re all ok, they’ll request the lab to mix the Lemtrada and then I’ll be hooked up to an hour of intravenous steroids before they move onto the Lemtrada. I’m bracing myself for a LONG day.

In the meantime, I’ve got a nice a weekend planned with a Poppy play date on Sunday and Dave and I are going to an Evening with Eddie Hall Saturday night.

The next time I blog, Day One will probably be done! Eeeekkk!

Me and my Girls! We went out for Pre Hospital cake on Sunday 😊
Said cake.

Life just goes on.

Being diagnosed with MS was a funny old thing. All hell broke loose because I’d lost the sight in my eye. I had test after test and appointment after appointment. Waiting and more waiting. As I chose to be open about my diagnosis, every question of “how are you?” was accompanied by a sympathetic, concerned head tilt.

I was on a roller coaster of emotions. Some days I found the whole thing really surreal, whilst on others I’d be cracking every possible non PC joke at my own expense. One day I felt particularly indignant whilst I was out for breakfast and overheard some older boys whinging about all the seemingly able-bodied people parked in a disabled bay outside of Sainsbury’s. Not all disability is visible you know (oh God, the sense of entitlement!) Fortunately it was rare, but I also had days where the tears wouldn’t stop and I’d find myself in quite a dark place.

I wrapped myself up in cotton wool a bit. I stopped going to the gym. I tried to explain every personality trait or ailment as MS, as I struggled to work out the difference between Jo, and Jo with MS. I read far too much into it. But I also felt like I needed to live up to the “label”. Because quite frankly, it felt ridiculous that I was now technically disabled. Sure, I’m in pretty much permanent state of exhaustion, but people are always tired. A few simple “adjustments” to my life, like taking the lift instead of the stairs because my legs weren’t working properly today became a huge deal to me. I became the opposite of suffering in silence, as I had done prior to my diagnosis. Suffering feels like a strong word, I just dealt with it. I’m not sure what stopped me just getting on with it like I had done before. I guess I felt I had a licence to be honest about how I was feeling, but also all these things that I’d made insignificant before were suddenly something I should be taking far more seriously. The pendulum swang way too far though! I felt like I was making a huge noise about the changes.

Somewhere along the line, people stopped asking me how I was doing. They had realised that physically, I was more or less ok. The world hadn’t ended. I didn’t have the “bad type” and I’ll probably be lucky and not end up in a wheelchair.

I wish I could have caught on as quickly as them!

I’m almost in that place now. Where it’s just part of who Jo is. Not something that I have to get my head around co-existing with every single day. I’m having a lot fewer bad days, and they have reduced to fleeting moments. I’m back in the gym and I’m making fewer jokes in bad taste. Some days I don’t even think about the fact that I have MS, although my impending treatment is kinda making that tough for the time being. But I can see that I can get there.

I can see that life just goes on.

Me, getting on with life and not letting anything wipe the smile off my face!

I like driving in my car…

Something that’s been hanging over my head since January, when I was formally diagnosed (which I’m now referring to as “D Day”) is my driving licence.

During that appointment, I was told to do two things aside from come to terms with my diagnosis:

  1. Tell my employer (assuming I was comfortable to do so)
  2. Tell the DVLA

The first one was easy. I had already been open about my health with my line manager and quite a few colleagues too. The second seemed OK too. My consultant told me that I would need to complete a form and send it back to the DVLA who would  then write to my consultant for her opinion on how my condition affects my driving. She reassured me that she had no objection to me continuing to drive.

I duly found the form online and set about completing it. I ended up waiting to my first appointment with Danny before completing it. I had a couple of questions to ask him before sending it. I knew that I would soon be meeting a specialist to find out more about medicating, and at this point I was expecting to be on a daily medication rather than the aggressive treatment that I’ll soon be starting. I wasn’t sure whether I should wait until that was decided, before informing the DVLA as they do ask questions about how you manage the condition.

Danny urged me to send the form off as soon as possible so upon arriving home from that appointment, I did so.

In spite of my consultants assurances, it was just one more unknown thing and something to worry about. What if they did take my licence away?

Within about six weeks of posting it off, I received a letter saying they were still awaiting information from my consultant and that they would be in touch in due course. A further three weeks later, I received another letter that made my heart sink.

“In addition to MS, we have information to say that you have another condition. Please complete the attached forms in respect of your Optic Neuritis.”

I was furious at first. I can see! My eye sight had come back and that was no longer an issue. I completed the new forms but I was worried sick. So worried, I included additional information although I wasn’t asked for it so that I could provide additional context. I couldn’t see how I would cope not being able to drive.

So for the last three weeks or so, I’ve been waiting with baited breath, half expecting my licence to be revoked. Yesterday I finally received confirmation that I can retain my licence, but I’m to be moved to a medical review one. Simply put, this means that right now, the DVLA are happy for me to continue driving but I’ll be reviewed every three years for any deterioration in my health. This is so significant as MS can really affect the eyes, as I have experienced with double vision and blindness.

I’m trying to see (yes I know!) the positives in this. They’re looking out for the safety of me, and everyone else. I don’t have to pay driving licence renewal fees anymore either. For some reason though, this is one of the things that comes completely out of left field and reminds me of just how serious what I’m going through is.

 

I’m a f*cking badass!

There’s a moment where you realise that this disease isn’t going to beat you. I had that moment this evening in the gym.

Prior to being diagnosed with MS, I was a reasonably consistent gym goer. I found a love for lifting heavy shit and I didn’t really look back. But then it all just stopped. I couldn’t face the gym. I was mentally exhausted trying to come to terms with the hand that I’d been dealt.

In a bid to reignite my passion, I switched gyms in April, leaving X4L (which quite frankly had really taken a downward turn) and moved to DW, which has now merged with Fitness First.

I was still at X4L though until April but nothing seemed to motivate me to go. That was until the day I somewhat dramatically had a complete melt down and realised that perhaps the only reason my MS wasn’t particularly showing itself physically, was the strength I’d spent the last four years building. Then I got really hysterical, or rather irrational and realised that if I didn’t go to the gym right this second, I would have a relapse tomorrow that would put me in a wheelchair.

Melodramatic as this was, it was probably the gigantic kick up the proverbial that I needed. I found my “why”.

I tentatively began dipping my toe back into the gym in early April, but I couldn’t face the free weights area on my own. I was terrified! I always had so much confidence at my previous gym, but I knew it and I knew lots of the faces. It was familiar. To help combat this, I dragged Lou to a couple of Body Pump classes, but then Clare told me that she wanted to start lifting weights.

Brilliant! This was just what I needed! I needed a project. After four years of having a personal trainer, I no longer need one. I know what I’m doing. So using everything I’ve learned, I have developed a training plan for me and Clare. Having someone to go to the gym with, makes it harder to not bother. I wouldn’t hear the end of it if I skipped a session. Believe me!

So this evening, as Clare and I trained back and arms, I had that realisation.

I don’t lift the heaviest weights in the gym. I don’t have the body of someone that lifts weights in the gym. I don’t count my macros (I’ve learned that it’s ok to just eat whatever you want and it balances itself out anyway!)

But do you know what I am?

I am a fucking badass

I had no idea that I have MS and I lifted all the heavy stuff. Why stop now just because I have a “label”?

So I’m not stopping. Sure, my goals have changed; I’m less bothered about hitting certain personal bests or targets and more bothered about just remaining strong and consistent. My grip has always been a struggle for me. Quite often my grip has hindered me before my strength has. It comes with the condition so it’s time to accept that that will always be a pitfall for me.

Just because I have MS, I don’t have to stop. In fact I can be less tough on myself when I don’t hit that personal best anymore. It’s ok. The fact that I’m even in the gym and lifting stuff that’s not exactly light, is pretty damn awesome.

***According to Urban Dictionary, apparently the first rule of being a badass is not talking about being one. I’ve clearly broken that rule, therefore I’m probably not a badass. But never mind. Because I’m a badass I don’t care what Urban Dictionary says.***