Talking to people about Multiple Sclerosis

Hey everyone, how are you all? 

So… “Talking to people about MS who don’t have MS” does anyone else get fed up and frustrated with this? Yep me too!! Especially being 27 (diagnosed 24) and having to adapt my life in ordering for me to enjoy it to its full potential… The thing that really irritates me is when people comment about it.. or if I’m struggling and I tell people that I’m struggling.. they either think “I’ve done too much or over done things” or “I just need to rest more and get an early night” 

Recently my MS flared up and I had tremors in my right arm and hand… It was automatically assumed that I had over done it and that I needed to rest more.. which yes sometimes I totally agree and I know when I need to just relax and rest.. I’m learning to know my body and to know when fatigue hits — yesterday is a great example.. I was quite fatigued and my arms & legs felt like dead weights.. which I now know is the humidity of the weather.. so I knew yesterday I needed to be slower and get an early night, which I did and today I feel a little better. However it just irritates me when people don’t think I’m being sensible or not prioritising… I plan, organise and prioritise every single day! Yes I’ve found that really helps me and keeps the every day stressed at bay.. plus I LOVE my #bulletjournal.. but being 27 and having to organise, plan and schedule normal day to day things can sometimes be frustrating. 

An MS flare up can happen at any given time with no explanation.. I spoke to my neurologist about this when I had my second big relapse this year.. he told me to stop looking for explanations… Flare ups and relapses can sometimes just happen and we don’t know why…. So this is what I’m going to say to people from now on lol! 

Also.. I need to learn that when I’m explaining to someone that I’m struggling or my MS is flaring up.. their response is theirs.. not mine… I’ve done my bit in making them aware that I’m struggling.. if they chose to accept it or not is their problem. 

I’ve started driving lessons.. 2 hour lessons every week and I recently spoke to people able how the 2 hours is getting too much for me.. their initial response was “oh no it can’t be that bad” you see?! So I stood my ground and told them that I am struggling with them.. but also that I’m going to find a way to help myself AND still learn to drive… Like dropping down to 1 hour lessons a week.. and see how that goes.. I’ve learnt it’s all “trial and error” with MS. 

My lovely blogging friend Surviving Life’s Hurdles wrote a lovely post the other day “What would you do with your life without your chronic illness” I loved this post and for me I think if I had never been diagnosed with MS.. I wouldn’t be as organised and I wouldnt think about little things.. and I would travel without having to think about “rest days” but this is the way things are now and you just have to live with the cards you’ve been dealt.  www.survivinglifeshurdles.co.uk

I feel better already speaking about how I feel on here.. as I’m sure people who read this will understand. Explaining any chronic illness I’m sure is just as hard sometimes. 

Thank you for reading this post.. does anyone out there struggle with talking about their illness or explaining it to others who perhaps don’t understand? I’d love to chat about it. 

Have a great day! 

Love Hannah xx

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Introducing “Chat MS” Facebook Group

https://www.facebook.com/groups/718223168361813/

Hey Guys! 

How are you all? I hope you’ve had a great Bank Holiday weekend 😊

So… This blog post isn’t going to be too long but I really want to share and spread the word on what I’m trying to accomplish. 

When I was first diagnosed with MS back in 2014 aged 24 I would have loved someone to relate to who was my own age or someone I could just rant to who would understand… But there was noone my own age that I could talk to, which left me feeling quite low and a little down at times. 

Now aged 27 and after having my 2nd big relapse I really got into wanting to share my story and help people.. I think it was down to the fact that I had people saying to me “try to ignore you MS” “You don’t need to talk about it all the time” “try to live a normal life” — I got so fed up with hearing these sayings that I thought “Why should I ignore my illness… Why should I just hide away?!” So then I decided that I wanted to connect with more people a similar age to me living with this chronic illness. 

I have been so fortunate to find some lovely people along my blogging journey… One being Natalie over on http://www.survivinglifeshurdles.co.uk her posts are amazing and have really helped me recently.. so I have partnered up with her and created a new Facebook Group… “Chat MS – Newly Diagnosed/Young People”

This group is designed for Newly Diagnosed people and people aged between early teens to mid 30’s… Somewhere we can all connect and know that there are people there who understand what we are going through right now. 

I don’t mean this group to be disrespectful to the older generation who have had MS for years.. believe me I have had so much help from them… My Aunt and Step mum alone have MS and have been a great help to me… However I want to connect with people my age.. and who are experiencing things as they happen. 

So working along side Natalie we are going to do weekly threads to help people manage this illness.. Chat MS is also a place where you can just come and vent or tell us how you’re doing and hopefully to make new friends 😊 

Who knows how far Chat MS could go.. but the more people I can support and help the better really!! 

If you know anyone who might be interested.. please share this link https://www.facebook.com/groups/718223168361813/ And help us spread the word 😊

Thank you for reading and I’ll see you all next week 😊😊 

Love Hannah xx

What I Got For My Birthday 2017

Hey everyone,

I know right?! Long time no speak! Well I’ve had a birthday recently AND been poorly so I’ve had a little break from blogging to give myself time to recover… I’m feeling much better now and ready to get my teeth back into blogging! 

I was going to film a video about what I got for my birthday, however the things that I got.. I can’t really show on video (nothing rude before you start thinking lol!!) They’re just not physical objects… 

So I thought I’d write a blog post about them instead 🙂 I hope you enjoy the read, leave me any comments and I’ll be sure to reply…okay… Let’s get started! 

Driving Lessons

I had decided at the beginning of the year that 2017 was the year that I would learn to drive… I know I’m 27 and still don’t drive, however where I live doesn’t really require much driving… I can get to work and to my mum’s via public transport, I can walk to the shops if I need anything essential or do an online delivery shop and I can get into town easily too… 

The main reason of learning to drive is so that George and I have more freedom… We don’t have to rely on others to take us to places. Also if my MS is particularly bad one morning before work then I can have more rest in bed and drive into work that day… I’d also love to say to George one day.. “Hey, let’s go out!” It will be so much better!! 

So for my birthday my main present was money to go towards driving lessons.. my sister recommended her driving instructor and he is so lovely (I had my first lesson last week and LOVED it!!) He was really calm and funny and really made me feel at ease! 

I’m hoping in a few weeks to sit in for my theory test (I hate tests!!) So some of the money will go towards that too. 

A NEW BULLET JOURNAL
YAY!! The other main present I asked for from George was a new Bullet Journal… The one I really wanted was a Leuchtturm 1917 dotter grid book and that is what he got for me… Also to go with it he got me some new washi tape and some colourful tabs! I absolutely love it and have already started in it! Maybe you’ll see a “Flip Through” soon 😊

A DAY TO LONDON 

Now my Aunt and I always like to “do something” for my birthday and make memories so this year she took me to London for afternoon tea at the Mandarin Oriental Hotel on Hyde Park! 

Once we got to London we obviously had to do the usual — Harrods, whenever we come to London we ALWAYS go to Harrods.. I mean.. it’s such lovely place we couldn’t possibly not go! We had a delicious lunch in the cafe upstairs, wandered around and admired all the gorgeous bedding! (I love bedding!!) And then had a look around the Harrods shop where I got a new water bottle and a Key Ring 😊

We then trotted off to the hotel for our afternoon tea, it’s currently having some renovation work done so we entered through the ballroom entrance.. it was gorgeous inside! Modern but yet beautifully elegant! The staff were absolutely outstanding and couldn’t do enough for us… When we arrived we were asked if we would like some water… THEN we were asked if we would like it “room temperature or chilled”!! That was the best part I think because I had never been asked anything like that before!! The waiters also came round a fluffed your cushions for you as you say down too which again… Impeccable service!! 

I opted for a gluten free afternoon tea because my stomach hadn’t been quite right.. and let me tell you! It was DELICIOUS! The sandwiches were lovely and moist, the scones and cakes were all delicious too.. ALL gluten free!! We couldn’t finish them all so the lovely waiter packaged up the rest and put it all in a gorgeous bag for us! We also bought some of the tea we had.. “White tea infuser with mango” it was delicious! 

All in all… This hotel is now our favourite.. we felt so relaxed and comfortable to just be ourselves here! We’ve been to The Savoy, Claridges and The Ritz… All amazing places, however Mandarin Oriental… I think tops them all!! We WILL be back!! We also went to the Ice Bar London.. and that was an amazing experience also! I’d highly recommend that to anyone 😊

(Check out my INSTSGRAM account to see more pics — hannaheliza_1990 :))

LUNCH WITH DAD

As well as driving lessons from my dad and step mum, my dad came down from where he lives in Yorkshire and took me out for a lovely lunch where I live.. we had a look around the shops and a cheeky drink before our meal.. then went to BILLS restaurant where I was greeted by a lovely bunch of flowers and a balloon on the table 😊 the food was delicious and the service was fab too! We then went back into the shopping centre and I got a lovely Superdry hoodie! I’ve always wanted something light that I could wear instead of my coat and this is perfect 😊 

My mum and step dad also gave me money for driving lessons, however my lovely mummy also gave me some vouchers for a spa that has recently opened near us and we are going to book a couple of treatments together.. I love anything spa related so I’m really looking forward to this 😊😊 

And finally my mum and sister got me this amazing Krispy Kreme doughnut cake and I absolutely LOVED IT!! I hope you enjoyed this blog post… Remember to leave me any comments and I’ll be sure to reply and I’ll see you all very soon 😊