It's been a year already!?

So I literally can not believe its been a whole year since I updated this site! Things have been beyond manic in my home life.

Last July me and my partner bought our first home together and we decided to move whilst still both working full time jobs which looking back was the worst idea ever haha!

But we coped and we have lived in our beautiful home for 7 months now and we love it!

a couple of months later in September we decided to get a beautiful Labrador puppy who certainly keeps me on my toes but I love that little puppy dog so much. Everyone thought I was insane getting a lab because of my ms but I refuse to stop doing the things I want in life because of this crappy disease.

The cherry on top was Christmas day.. my wonderful boyfriend PROPOSED!!!! Which officially upgrades him to fiancé muhahah. We are over the moon and we are getting married in September next year, I can't wait to be his wife! He has given me never ending support throughout my ms journey and I couldn't be more grateful.

Over the last year my journey has gone from bad to worse and I really haven't had any good news to share and to be honest I felt low I didn't really want to share the bad news either! But holding it in hasn't done me any good either so I am ready to share.. If anyone is reading I suppose its a bonus but if not at least I am getting things off my chest and down on paper.

SO every mri scan I have had since being diagnosed in oct 2018 has come back with new lesions and active lesions in both my brain and my spine which is huge blow! it means there is more damage in both and active damage. Despite being on Tefidera (disease modifying therapy treatment) my ms has continued to progress faster than we had hoped.

Last month I woke up with a new symptom of slurred speech I honestly sounded like i'd been shotting vodka since 9am it was awful I was so frightened. You honestly take things like speech for granted its never really on your mind you could lose it.

I ended up spending all weekend in AAU at the hospital and on the sunday had an emergency mri scan that confirmed new lesions in my brain effecting the part of my brain and deals with coordination

which is why I could hardly talk.. I cant explain how much energy mentally and physically it took just to try and form a simple sentence.

I AM SO fortunate that my speech has now returned to normal but it was a huge scare and because of my mri results we now need to take serious action with my ms treatment.

Now for me this is the hardest part! the risks of more powerful drugs and things I may have to give up without choice. I saw something another ms warrior had written and I honestly couldn't agree with it more or said it better myself!!

"its pretty mad that we go for these radical disease modifying therapy treatments knowing they are not a cure, they are only a blind leap of faith in the hope that things wont get worse"

So now I start a new journey and that journey will be on Ocrevus.. I have so many concerns and qustions about this drug and I am still waiting for my answers but I have been told we cant do nothing we need to do something because my ms is very active and progressing.. I need to get on treatment asap.

I will dedicate a separate post to Ocrevus and my feelings towards this drug and the choices I have to make and the choices me and my fiancé have had to make.

Ms is not pretty! honestly its hard on my body and mind. I wish I could change this disease but I cant so for now I have to try and cope the best I can.

If you're reading this thanks for sticking with me after a year of silence I am ready to share my journey again! If this even helps one person suffering to feel less alone then im happy!

thanks

T xox

Brand spanking new year...

I have never been happier to welcome a brand spanking new year. I had a fantastic Christmas and new year (first sober one in forever) filled spending time with family and friends and enjoying myself, I do hope all of you had a great time!

Now here we are.. I really did go into the start of this year with a positive attitude and Jesus Christ its working for me!

Right now I feel great! After two months off work sick I am finally back YAY. I came back on Monday this week 7.1.19 and so far I am absolutely loving it, its so nice to see my friends and my clients. I have only seen a few clients so far but they've been happy to see me and I've been mega happy to see them! Being back at work has given me a purpose again, a reason to get up in the morning and a reason to actually get dressed (seriously I was going to the Drs in my pjs). I'm making phone calls, doing paperwork and of course drinking way to much black coffee but I feel like a pretty normal human being again.

Now of course pain doesn't just disappear but I am learning to manage better, a combination of different pain meds really helps to keep most of the pain at bay from morning until afternoon which is a big help. I'm starting to become more active again and I think that's had a massive improvement on my pain and my fatigue don't get me wrong I'm still tired and unfortunately there isn't a lot that can be done to help fatigue but at least right now its not crippling fatigue keeping me in bed.

As its a brand new year obviously I am back on the slimming world bandwagon... I have been totally on plan since new years day and I'm so bloody proud of myself and I'm enjoying myself again. I am my own number one fan right now for being so good considering I still have a mountain of Christmas choccy to devour but not yet, maybe when I've lost a stone or two. I purchased a beautiful food diary all made for slimming world its been helping me keep track of the food I'm eating and I do use an Instagram to post daily food and other bits. So far so good and I really hope it stays this way and I will keep you updated!

The end of last year ms was a shit to me and I let it take over! I tried to think positive but the pain and fatigue stopped me! But not anymore! I know there will be bad days/weeks/months but just because it has hold over my body doesn't mean it has to have control over my mind. I am determined to carry on this year just how I started.

With a positive mindset!

T.xox

Saying goodbye to 2018

So here we are nearly at the end of another year with the hopes of the next year being 'our year' well I'm pretty sure that's how I felt this time last year, feeling excited to make changes and fresh starts. Most of us plan on shifting the unwanted weight (that is still number 1 on my new years list) or quitting our bad habits.. more exercise? I did not complete any of these goals this year, I gave them a whirl but 2018 was not my year.

Since being diagnosed to be honest ms has kicked my ass! Daily the pain and fatigue continues to grind me down, its hard on my family and friends and its killing me off emotionally. 7 months ago my life was totally different yes I was tired but not like this, my days are spent sleeping for hours on end and then waking up feeling like I've been hit by a bus. I feel lazy and pretty useless, I cancel most of my plans because I just don't have the energy to get out of bed let alone have fun.. I miss out on a lot and its not because I don't want to take part because there's nothing id like more but sometimes I just cant.

It can be a lonely old world. I don't think at 22 I was prepared for having an auto immune disease with no cure. The last half of 2018 has been more doom and gloom than id hoped for but that's the amazing thing about new years its the time for fresh starts and new goals no matter how big or small! Its the time to put the past behind us and focus on the future.

I've been cooped up off work sick since 23rd October and I finally go back in the new year... am I excited? YES I AM. I cant wait to feel like an adult again and be apart of work place, see all my clients and my friends at work. Talk about work related things and to talk about problems that aren't my own for a change!

I feel like this year I lost a huge part of myself and gained ms. Id rather swap back, id like to have my confidence back, I want to laugh more and I really want to learn to not let this disease consume me and my energy. So I'm mega happy to turn my back on 2018 don't get me wrong I've made some amazing memories this year and ill treasure them but I'm ready for the next year.

2019 GOALS

. Lose the bloody weight girl

. Smile more

. Forget the little things

. Forgive

. Perhaps quit smoking (see how we do)

. Live a healthier lifestyle

. Start knitting

. Spend more time with family and friends

. STAY POSITIVE

I am hopeful to take 2019 by the horns and smash the shit out of it! Back to work and back to slimming world, back into a healthy routine for my body and mind its just what I need. I'll be spending new years eve at home with my man playing board games waiting for the midnight fireworks on tv. Perfect way to end this year and start the next one.. now until then I shall continue to stuff my face full of choccy and eat baileys and ice cream!

SEE YOU ALL NEXT YEAR!!

T.xo