Weekly Update:- Life with MS

Hey Everyone! How have you all been this week? Let me know in the comments how you’ve all been ☺️

So.. I’ve been fighting off a summer cold this week, in fact I had to take a few days off work because as us spoonies all know, it’s not just the virus we’re fight but also our other issues too!

My MS symptoms have been heightened anyway in the heat, but having a cold too just made them worse.. especially fatigue!!

But with plenty of rest, lot sofa fluids and good food, I’m finally out of the tunnel and went back to work yesterday and did 6 hours, which I’m really proud of! I was exhausted when I got home and in fact fell asleep at 9pm! (Yeah I was a little annoyed about that because it was a Saturday night — but when you have any other chronic illness you learn to become a lot more relaxed and chilled about life)

Copaxone is still going well, apart from the odd rash I get after injecting.. but I’ve come to realise that if I inject and I haven’t had enough fluids, then the rash is a lot worse.. so I now make sure I drink about 3 glasses of water before I inject and that seems to be work #copaxonetip lol!

Ive also been discovering some new vegan food from my local Sainsbury’s that’s delicious! Vivera have come into the shelves in some Sainsbury’s and Waitrose stores… Some of the things are quite pricy.. but worth it! I had 100% Vegan BBQ Pulled Veggie and it was delicious (made from soy) and I’m looking forward to trying more from them!

Other than that this week has been a little bit boring because I’ve been poorly.. but now that I’m back to almost full recovery (and my MS symptoms are slowly calming down) I’ll be able to get back to my adventures ☺️

I hope you all have a great week! And I’ll see you next Sunday! ☺️

Lots of love Always

Hannah xx

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Wedding Planning & MS

Hey Everyone, how are you all doing? I hope you’re having s good week! For those of you loving in the UK how are you finding the heat?

I like it for about ten minutes and then fatigue sets in and I become an extra out if Sean of the Dead (zombie movie lol) but I love sitting in the garden early morning — you can hear the birds and it’s cool enough even though the sun is shining ☺️

I’m full of cold at the moment (yes, how can you get a cold in summer!?! And no it’s not hayfever) so I’ve mainly been resting in bed because doing much else takes it out of me but I’ve had the pleasure of finally watching The Greatest Showman — have you seen it? If you you must, it’s amazing!!

Anyway, this blog post is all about Wedding Planning with MS. It’s just under a year until George and I get married (it’s still weird but very exciting when I say that! I think it’s because I’ve been a Miss all my life and soon I’ll be a Mrs! Haha I’m smiling now as I write that!)

For us we wanted our wedding to be simple, we didn’t want a big show or celebration because firstly my energy levels start to drop from about 4pm onwards lol and secondly we want it to be intimate so everyone can enjoy the day 🙂

We are getting married in my home town, which is just up the A1 near Grantham, UK.. this is the one thing I’ve always wanted, we are having the reception in my Grandmother and Aunts back garden, their house means a lot to me because it’s been there throughout my whole life and walking down her stairs in my wedding dress is something I’ve always wanted to do ☺️

George is probably the most easy going person I know ever! We both decided on having afternoon tea (who doesn’t love finger sandwiches and scones!? Lol) and his request is that we have no speeches. We will say a few words of thanks and then enjoy the afternoon before heading to London for a couple of days as husband and wife! (We will be going to Benito’s Hat in Kings Cross because we go there all the time usually, so going on our wedding day is a given!)

Now.. the planning.. you’re going to laugh.. most of the planning is virtually done!

We are very grateful and thankful that family have helped out a lot and the key word for this planning is “stress-free” well as stress free as we can make it and so far it has been. The registry office is booked, the catering is booked, the marquee is booked, wedding cars booked and all the inbetweens are coming together and my little sister has offered to make our wedding cake as her gift to us, which will be amazing!

We’ve got the table decorations, most of the bouquets (we are having fake flowers because George suffers badly with hayfever) I’ve even got my wedding dress, Vail and shoes!

When it came to the dress, I literally tried it on and that was it.. you know when you just “know” it is so comfortable, beautiful but also simple.. like I mentioned we want our day to be like us.. simple 😂🙂 we found it in a shopping outlet store called Downtown.. we didn’t intentionally go to buy it there and then.. my Aunt came with me, my mum and my sister because they were selling Monsoon wedding dresses for under £100!!!!!!! We had loads! I mean probably about 5-10 dresses.. all storming into the changing room.. the last one I tried and that was it! Sorted! (I even did the sit down test to make sure I could sit in it!)

We are having a simple afternoon tea for the reception with a glass of prosecco but no other alcohol — George and I don’t drink so we decided that we weren’t going to have alcohol and we’re also bit having an evening reception — like I’ve mentioned my fatigue gets worse in the evening, which means I can’t party until 1am in the morning 😂 but to be quite honest.. I’m completely fine with that 🙂 I want to remember every nano second of our amazing day with all the people we love the most so not having alcohol or an evening do is fine 🙂 plus people will be driving.

It’s funny when people ask me “how’s the wedding planning going” I always reply “oh it’s fine, I haven’t done much recently because most of its sorted” their face is always a picture “what it’s all planned?” Lol.. as you all know I LOVE organising and planning so I was like a kid in a candy shop doing the planning.. don’t worry George had input too it’s what we both want ☺️

Planning a wedding with MS for me is all about managing stress levels.. thats another reason why we have planned so much in advance — also places get booked so quickly! My family have been amazing with helping me to plan and doing what George and I want which makes me feel so overwhelmed with gratitude.

People laugh at me when I say that I want my wedding to be as stress free as possible — but I ask them why? Why does it have to be stressful? Only you can make a situation stressful, if you go in thinking “this is going to be stressful, then 9/10 it will be” I went into this thinking “this is going to be amazing and exciting” and guess what… It is!

The next part of the planning is just getting the little things organised like “the stationary bits” I like to call them, mainly decorations but that can wait until the new year after we’ve sent out the invitations!

So that’s it… Wedding planning pretty much sorted just the final touches really.. I think because we are having a small and simple wedding it’s been easier.. I’ve also been determined to keep it low budget, why do you need to spend £10,000 on your wedding day (sometimes more) when it’s just about two people declaring their love to family and friends and who want to be together forever.. in this life and the next. (My opinion only btw!)

I hope you’ve enjoyed the read and when the big day arrives I will try and take as many pics as I can (maybe I’ll have to pinch pics of other people lol) and will write a post about it 🙂

Lots of love Always,

Hannah xx

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

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

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

#KISSGOODBYETOMS The Final Week! & World MS Day

Hey Everyone! How has your week been? Hey guess what!? I’ve got one sleep until o can rejoin the social media world! 😊

I’m so excited to finally be back to reply to your messages, get back on Insta and watch YouTube! (Haha I’m going to binge watch on Friday lol!)

I’ve been filming everyday throughout May everything I’ve been getting up to and I’ve really been enjoying daily vlogging, maybe to the point that I’m actually sad it’s coming to an end?! I’m wondering whether I keep up with the vlogging… We shall see.

Starting the 1st June there will be daily videos on my YouTube channel so you can see what I got up to 😊 Hannahs Youtube

I have enjoyed the break and found lots of little things that I’ve been able to pay attention to, also not looking down at my phone all the time lol and actually looking at the beautiful world that we live in!

It’s also World MS Day today! I’ve been diagnosed 4 years this year and that’s just crazy! I’m now focused to push awareness in a realistic, positive way… Through my blogs and vlogs.

MS really has changed my life! And I can finally say that it’s changed my life for the better! I’ve been able to discover self love and self care, find a potential career path, which I’m so passionate about, make new friends and I got a cat 😂🐈

I’ve recently started treatment and so far so good.. I wrote a previous post about my first week so you can check that out if it interests you ☺️

This week has been good, we had a bank holiday and I went with my Aunt, Uncle and Grandmother on my very first steam train, which was totally amazing! Then I’ve been working and today (Wednesday) I went to Stamford (UK) with some friends for a little look around and lunch — not long home and I’m quite tired so having a rest and a little nap. Tomorrow I’m getting my hair cut! (I’ll post a pic on my Instagram @an_ordinary_girl_with_ms

Anyway! I can’t wait to chat to you all soon! I hope you’ve had a great start to the week!

Sending lots of love,

Hannah xx

Week One of Copaxone in the bag!

Hey everyone! How are you all doing? I hope you’re going to have a lovely Bank holiday weekend and if some of you are working then I hope it isn’t too hectic!

Today I’m going to chat about Copaxone, a Multiple Sclerosis therapy treatment or DMT (disease modifying therapy).

They are injections that I self administer 3x a week and there’s a 38% chance of reducing relapses and slowing down the progression of my MS.

Ina previous post Restarting MS Treatment I talk briefly about Copaxone and what it entails.

So, it’s been a week since I’ve been on this treatment and so far, so good! I feel absolutely fine, no real side effects at all, which was the one thing that I was slightly anxious about.

I got a delivery in the post that contained my sharps bin (a travel shapes bin), a diary log, my injections, an epi- style pen incase I didn’t want to actually inject, a cool bag and a rucksack to store things.

I know some of you who don’t like the idea of injecting, but honestly it’s fine. My pain threshold isn’t overly high so you can trust when I say it’s not bad, the needle is really thing and about a centimeter long.

The only part that has been a bit painful for me has been 5-10mins after the injection is over, it stings a bit (you can’t run the area lol.. which is so hard not to do!) It feels like a bee sting maybe (I’ve never had one haha!) But that does pass over 5 mins, just breath into it.

But apart from that it’s honestly been fine, I’ve not noticed anything happen, which again is great and hopefully this will be the treatment for me 😊

On one of my YouTube videos I have shown you a day when I inject but not of me actually doing it — I maybe thought people wouldn’t like to see that?! If you would like to see the whole process then please leave me a comment and I’ll do a mini video dedicated to that.

But all in all Copaxone and I seem to be getting off to a good start and I know it will continue 😊

Thank you as always for reading and let me know if you’d like to see the whole injection process and I’ll film a video.

Love to you always

Hannah xx