Living with An Invisible Illness

Hey everyone, how are you all doing? Let’s have a chat in the comments below? ☺️

So.. this week I have increased my hours at work up to 6 hours!! I’m working 9-3:30 and I’m really proud of myself for getting this far!

Some people out there might think “it’s only 6 hours” but for someone with any kind of condition/illness it’s kind of a big deal!

People don’t seem to understand that it’s not just about working however many hours you work.. it’s before and after too. Now I get up at 6am to get things sorted and to make my morning routine as restful as possible and no stress, so that we can leave the house at 7:30 to get the bus.. then I finish work at 3:30, walk to the bus stop get on the bus and ride the 20-30mins journey home (depending on school kids and traffic) I’m usually home by about 4pm or just after and by that time I’m exhausted! See what I mean?

Anyway this blog post isn’t about that. This week I’ve been struggling a lot with fatigue, also been getting tingling/vibrations in my legs and today (Wednesday) my left leg felt really heavy and I had pins & needles in my foot. I’m not getting worried or alarmed but I know I’ve had a busy week, increasing my hours at work and the beautiful yet hot English weather we are experiencing at the moment.. definitely doesn’t help me.

Going back to today (Wednesday) I was heading into town to get a couple of bits and then onto see my lovely bestie ☺️ fatigue was really getting at me this morning.. but after an energising smoothie later we were almost ready to go.

Today.. I decided to use my stick. It’s collapsible so if I didn’t need it I could fold it away, but I did need it so I used it. It was a real support when I was walking around down, which is great.. but that’s still NOT what this blog post is about.

This blog post is all about how I was treated when I had my stick with me!!

Having an invisible illness we all suffer on the inside but it never shows on the outside — we all just put on a smile and crack on don’t we? No one bats an eye lid, no one helps us or moves out of our way or holds doors open for us.. we appear to be like everybody else.

When I used my stick today I was treated very differently.

I would be walking and someone would be walking towards me and theyd immediately move out of my way smile and apologise even though they weren’t in my way.

The waitress at Carluccios helped me to my seat (I didn’t need help but she felt that she needed to) I asked where the toilets were and she guided me to the disabled ones immediately.

A random lady in the queue at Primark let me go in front of her so I wasn’t standing for too long.

The bus driver lowered the step so I could get on easier and waited for me to have my seat before pulling away.

The little restaurant we stopped off for lunch a customer pulled out a seat for me to sit on.

The taxi driver got out of the taxi, opened the door and got a little step out so I could get into the taxi (it was a van lol) and then drove right up to my door and did the same thing to help me out.

This is what happened today, now… Do you think this would of happened if I didn’t have my stick? No.

I would still be struggling whether I had my stick or not, but because I look “fine” or “well” which don’t get me wrong it doesn’t bother me now (I can go makeup free and not look I’ll which is great!)

But what I’m trying to get at is showing you that when I had my stick with me, I’m treated very differently even though there’s nothing different… It just shows exactly what it’s like living with an invisible illness.. most of the time we just carry on.. no one knows the struggles we face underneath the surface.

It just made me smile a little that my purple floral stick changed so many people’s attitudes and the way they treated me.

The motto of this blog post.. just because we look fine sometimes and I say sometimes because I’m fine and happy and noone needs to worry but sometimes we are struggling.. no one knows because it doesn’t show… So be kind, be thoguthful and be loving.. you have no idea what people are going through.

Sending you loads of love always

Hannah xx

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Father’s Day, Royal Ascot, Copaxone & Work Update

Hey Everyone, wow! I have been a bad blogger haven’t I?! How have you all been?

You know sometimes, life really does just slip past you in the blink of a moment and then suddenly a week has gone by! Well I’m hear to have a lovely chat with you all and give you some updates about what’s been going on ☺️

Copaxone

So I have been taken Copaxone to help manage my MS for just over a month now. I’ve had no side effects apart from the injection site getting lumpy and a bit itchy but that does subside. Is it working? I have no idea, people sometimes think that this drug is going to make me feel better and yes it might have helped, however I still have my MS symptoms. The drug is supposed to help with progression and hopefully prevent further relapses… So far thats working!

I also firmly believe that since I’ve changed my lifestyle a bit that, that has made a huge difference to relapsing and symptoms. Yes I still have my symptoms, but I feel I’m in a much better please to deal with them now and I’m a lot more sensible when symptoms creep back in and start giving me hell.

Self injecting is no problem, I’ve had that many injections over the years that I felt comfortable to do this. I’m one of those strange people who has to watch when I’m having or doing the injection, maybe it’s because I’m in control of it? Anyway I’m having no issues with that, which I’m beyond grateful and thankful for 🙂💉

Royal Ascot Day

Thursday 21st June myself, my sister, Aunt and Uncle attended Royal Ascot Ladies Day. It was SO exciting! All the outfits were spectacular (even the bad ones lol) the horses were beautiful and just the arena was breath-taking.

I had Wednesday before off work to allow myself to fully rest before I went because I knew it was going to be a long and busy day and I’d also booked off the Friday too, again I knew that fatigue would be worse on the Friday after Ascot so I made sure I rested fully.

Here are some pictures of my day at Royal Ascot and… I saw the Queen! 😍👸👑

Father’s Day

The weekend before Royal Ascot, my sister and I went up to surprise my dad in East Yorkshire for Father’s Day! That was a great surprise! He had no idea we were going and we his behind the sofa and door and gave him a lovely surprise when he came in from shopping.

We stayed Saturday night and came back Sunday, I hadn’t got any extra time booked off work apart from the Friday before to get myself ready for the weekend.. so Monday fatigue had started to creep in. Thankfully at the moment I finish work at 3pm so when I got home I completely rested and didn’t over do it and by Tuesday I was feeling better.

Work Update

Work is going well 🙂 I’m still working four days a week and have come to the firm decision that I would like to stay on four days a week.

I’m finding that I actually have a life now, I’m able to balance work life and home life together AND manage my MS. I usually rest fully on one of my days off and that enables me to ACTUALLY enjoy the other days off that I have. Before when I was working 5 days a week.. it would be this routine…. “Go to work,come home, eat then sleep” on my day off I never had the energy to do things so that one day was taken up and then my last day off I would try and cram in what I had missed. I started getting really down and low about it because I’m only 28!! I should be enjoying life and having fun, which is why staying on 4 days a week at work is the best chance for me to have that balance.

I am however increasing my hours. I have been working 5 hours a day over the last few months and I can now say with excitement and pride that I’m increasing my hours up to 6!!!

To some people that might not seem like a big deal, but last year before my last relapse I couldn’t even manage 5 hours at work 5 days a week before it sent me under. I was off work for 3 months and in those three months I thought “no! Enough is enough, I want to start taking my life back.. yes I can’t stop relapses, they will happen and noone will know why, but I can do everything in my power to try and limit them” and that’s what I’ve been doing.

I’m excited and ready to go up to 6 hours, my first day is Monday (ooh tomorrow!) And I’m not nervous at all.. I’m excited! 🙂☺️

I also have an appointment with my MS nurse tomorrow to discuss Copaxone, so I’ll give you all can update next week on what’s she’s said about it.

I hope you’re all doing okay and as always, leave me a comment and I’ll be sure to reply!

Lots of love Always,

Hannah xx

A lovely catch up!

Hey Everyone! How are you all doing? I hope you’ve had a lovely weekend, let me know in the comments section below!

Well today I’m off work with some kind of stomach bug (luckily it’s passing and I’m able to eat light things again!) But honestly I feel so wiped out and exhausted! I was going to try and go to work today, but just getting to the bathroom took all my energy – I’ll be back tomorrow! I’ve had lots of sleep and just running myself a nice bath to help with the pain you get following a bad tummy.

Anyway! Aside from that TMI! Lol.. I’ve had a lovely weekend this weekend.

I met a new friend Saturday night and we just relaxed at mine, caught up on Love Island — are any of you watching that? (It’s my guilty pleasure!) And had a cheeky Chinese (the Chinese we went to did tofu in soy sauce which was delicious!) And then yesterday I had my Aunt and Grandmother over to help me sort out my back garden 🙂

It looks so good! I love it so much! I love my garden in general it’s the perfect size for us and we can maintain it (well… We try lol)

This weekend I had some new fernes out in with some pretty flowers (can’t remember what they’re called but apparently they’re really hard to kill lol)

I made us some yummy vegan sandwiches with some veggie crisps and lots of tea. Then my lovely sis popped over and we let Arthur come out into the garden on his cat lead, which he enjoyed tremendously!

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hope you’ve all had a lovely weekend? I’ll be glad to get back to feeling less sicky but I’m sure I’m on the mends now.. also are you enjoying my YouTube videos? 🙂 They’re still going up every day throughout June.. if you’d like to check them out then click this link June Vlog and it will take you to the most recent vlog.

Sending lots of love and hugs always,

Hannah xx

Back on Social Media

Hey everyone! So, my month is over and it’s been very interesting (I hope I have now replied to all of your comments)

How have you all been this week? I hope you’ve had a nice weekend too.

So being back on Social Media — yes I’m super excited, however I’m also a lot more relaxed about it. I don’t check my phone constantly and I don’t aimlessly look at random posts or videos — for me that’s amazing! I’d always end up on random videos or posts on twitter lol.

It’s been amazing to catch up with all my internet friends and just connect again, as we all know this is something I love to do and I’m passionate about.

It’s nice to also be able to share my Copaxone journey with you all and also on Instagram too, that’s all still going well which is great! 😊

Have any of you seen my YouTube videos? There’ll be videos going up everyday in June all about what I got up to in May — little daily vlogs. Here is the link to my YouTube, I’ve out all the videos in a playlist and they’ll be uploaded daily. Hannah’s YouTube

I managed to reach my target for donations and I’m so thankful, grateful and super proud! All goes to an amazing cause!

So for the rest of today I’m going to relax and we are going to see friends later for a cheeky lunch date and I can’t wait!

Also just quickly I’d like to mention that my local MS Society group in Peterborough are hosting a 50th Anniversary concert on 9th June with professional soprano Gabriella Pineda Rodrigues accompanied by Kate Wishart.

It’s on Saturday evening 9th June at 7:30pm tickets are on sale for £8 if booked or £10 on the door. At Step John’s Church, Cathedral Square Peterborough.

I hope you all have the best week and I’ll see you all very soon 😊

Lots of love Always,

Hannah xx