Holi-YAY weekend come at me!

It’s bank holiday weekend!! Or Holi-yay for those of you that don’t live under your duvet cover, you lucky little devils. This weekend will be spent at my new house doing what I now do every single weekend – watch my other half graft and try make it beautiful whilst I help for 5 minutes and then end up either too tired or in too much pain to continue. It’s the thought that counts though isn’t it?

Most of my time at the moment is spent horizontal. I pretty much move from bed to sofa and back again. I need to seriously get over this and work out how to get my energy back.

I have my first MS Nurse appointment tomorrow since being on Lemtrada. I feel a bit strange about it all to be honest, had my first round of bloods on Monday so I’m expecting she will have the results and (fingers crossed) will be telling me all is well. My concern however, is how insanely tired I have been since that week in hospital. I can’t tell if it’s in my head or whether it is genuinely something going on. I stand up for 5 minutes and need a half hour lie down, I’m pretty sure that isn’t normal but I mean I’m not sure anymore. I’ve had a rash up my chest for around 2 weeks but I keep convincing myself that if I go to the doctor’s it will just be a “Oh it’s just another symptom” so talk myself out of going. Has anyone got any tips for how they’ve overcome this?

Im really excited for the first full week of June. Big things planned! I’m going to Warner Brother Studios with my chap and the parentals, it’s all very exciting. One of my pals from uni is also getting married at the end of the same week so it will be a drive upto Newcastle to give him a big cuddle and celebrate until the sun comes back up 2 days later, or you know, until I’ve said hello to everyone and then stood up for too long and decided it’s time for bed. Whichever comes first. The latter will definitely come first.

First time we went to Warner Brothers

It’s always great what this time of year brings, it’s my first summer with an MS diagnoses and although I’ve suffered from tiredness a lot I have never had to try get on with this much exhaustion. It’s going to be a real learning curve to learn to feel ok about just sitting and relaxing and not being involved in absolutely everything.

So yeah, if anyone has advise on you know like how to balance being insanely tired all the time but like… Still having a life, I’m totally open to suggestions.

  1. Short and sweet is ok
  2. Getting back into things slowly and surely
  3. Big summer ahead

H x

10 Comments

  1. Hiya Hannah! This will be my first summer with a diagnosis too. I don’t know if I’m allowing the “label” to get to me but I’m currently more exhausted than I’ve ever been 😔 this week at work has been really tough. I’m shattered! I also think I’m on wind down, knowing I start Lemtrada in just over two weeks. I have no words of advice for you, but wanted to let you know that you’re not alone and I know how you feel! Hang on in there and have a wonderful weekend xx

    Liked by 1 person

    1. Ah thank you Joanna!! Sometimes that’s all you need, to know you aren’t alone so I really appreciate that 😊 I hope you have a lovely weekend too! Only 2 weeks until Lemtrada, that’s very exciting! Xx

      Like

      1. I’m somewhere between excited and terrified! Not so much of the actual process but what may or may not happen after. I’m sure all will be fine though.

        And you’re never alone 😊 I’m always happy to talk if you need xx

        Liked by 1 person

  2. If I can offer unsolicited advice (so please take it or leave it): see if you can get a cooling cloth for your neck. They are the types of clothes that you wet (and re-wet) and wrap around your neck. It helps with the heat and humidity which can be part of your energy drain during the summer. I find that I struggle with the transition from cooler weather to hotter weather and then spend a good chunk of time in AC throughout the summer (only going out in early morning/late evening).

    Liked by 1 person

    1. I had never considered it being due to the weather but it has pretty much been since it’s been so much warmer!! That is an absolutely wonderful piece of advise! I’m definitely going to give it a try, thank you 😁 xx

      Liked by 1 person

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