Sometimes it’s just so frustrating

I want my blog to be a positive space but today I feel like opening up and revealing some of the realities of living with a chronic illness. Sometimes it can be so frustrating. 

I’ve been ill with Postural Orthostatic Tachycardia Syndrome for what seems like forever now, even though its actually been since January this year. It certainly hasn’t got any easier physically as I can probably do even less now than I could earlier this year, but mentally I have reached a point of acceptance and tend only to get upset when I’m having particularly tough days because the symptoms get too much. I no longer worry and stress about what my future may hold and I live in the now; taking every day/hour as it comes.

Having a chronic illness prevents me from doing many things; going out for dinner, going for a walk, socialising with friends, exercising… I could go on forever. Normally I am able to accept that and appreciate the little things I can do like baking with assistance, watching a film with my boyfriend etc :) But all I wanted to do yesterday was go to two shops with my Mum. I’ve been eyeing up all of the new autumnal pieces in H&M and New Look – the beautiful burgundy and khaki are in again. Ive bought a few things online recently but sent them all back as none of them look as they did on the websites and they didn’t fit. Shopping online simply isnt the same as shopping shopping?! Even though we parked almost right outside the shops I wanted to go to (as I have my blue badge now, woohoo), and used the wheelchair, by the time I had been down a few isles in New Look I was done for the day but I pushed on as I was desperate to shop. By the time we got to H&M it felt like the shop walls were closing in on me. I was so dizzy, my head was pounding and full of intense pressure and the sensory overload struck with full force. I felt so overwhelmed and couldn’t process anything around me. I don’t know whether it was because they have very narrow aisles in H&M, the lights were too bright, the music was too loud, or there were too many people or all of the aforementioned, but I had to get out of there asap. I could already feel the tears building. As soon as we got out of the shop the waterworks began behind my large bug-like sunnies. Why couldn’t I just be well enough to enjoy looking around two measly shops?! Girls my age go shopping all day with their Mums, I just wanted half an hour in my chair to treat myself to a few bits. I felt so defeated and frustrated. And what’s more, I will experience pay back for about a week because I had a look around a shop…crazy!

Rant over. Today I still feel defeated but I am feeling a little better about what happened. I am sure in a few days time I will look back and appreciate it took a lot of courage to try and go shopping. I will never stop trying to do the things I love because one day I might just be able to do them…


Do you ever get days where you feel very frustrated? Xx


  1. thevegatarian September 21, 2014 / 6:16 pm

    I love this post and your whole blog sweetie! I too suffer from similar illnesses and know how debilitating it can be and how frustrated it can make you even when your trying to be so positive. You’ve got an inspiring story! And it only makes you more human and relatable to have these frustrations amidst all your positive days :) stay strong lovely!

    • spooniesophia September 24, 2014 / 6:04 pm

      Aww thank you so much for your lovely comment! That means such a lot :) hope you’re doing ok, sorry to hear about your illness.
      Hugs xx

  2. berrystylegirl September 21, 2014 / 6:26 pm

    Honey, no words will express what I want to say you. My soul feeling your pain and…just send you all warmth of my heart.
    I rarely think or write or say about my frustrating and tough days. Don’t used to it. But will now cause hope it could somehow help you even if a little. Sometimes it seems that my life is full of fights – with myself, with my shyness – I was nearly crying on Friday when said something in auditory but have managed not to do it, with my ED, headaches, with many things. And sometimes I feel really tired from it. But so used to be positive that even can’t say ‘I’m tired’. Smile instead. It’s always sincere smile and I sincerely believe that each situation is the best cause it’s unique and it’s happens right now and. But sometimes I just wish that I could allow myself not to fighting, to have a break. I often feel so emotional exhausted after exams that might cry, but not all know about it. And with those who knows I’m struggling to stop crying the moment I start. No, I don’t regret. But…but) I don’t know how not to fighting. Even now it’s hard to find words. But even in the most frustrationg days keep in mind all good things, all my lovely people, all great. And smile. Cause whatever happens in my life, at least I can smile. And try again. Again and again.
    I believe in you. You’ll do what you want – just be who you are and you’ll achieve what you want. Will say again – so happy that I’ve found you. Wish you feel better tomorrow. Thank you for your being, for your opening.

    • spooniesophia September 24, 2014 / 6:09 pm

      Polina hello!
      I’m sending you warmth and love right back <3
      Im so sorry to hear about what happened on Friday :( you cope with so much, and you do so well! It's normal to feel tired and frustrated when you live with an illness. Keep going, you will get to where you want to be in life. You are a fighter!
      I would love a break from it all too, so much. Cry and let it out when you need to, it will help and make you feel better. You are so brave Polina!!
      So happy I've found you too, I really hope today is a better day! Sending you a big hug xxxx

      • berrystylegirl September 24, 2014 / 6:24 pm

        Thank you lovely. I will never give up and know that you won’t either. Hug you:)

  3. Louise September 21, 2014 / 6:30 pm

    I’ve been there so many times. :( It’s why I started shopping pretty much exclusively at Matalan as I find it so much easier than other shops. If you go during the week it’s practically deserted, everything feels more spacious and you can park right outside my local store.

    It’s so frustrating when you can’t do the things you want to do. Hang in there hun, you will again one day x

    • spooniesophia September 24, 2014 / 2:37 pm

      I am going to have to try Matalan Louise, I’ve not been there in years!!

      Hope you’re doing ok lovely xxx

  4. Jennifer Albrighton September 22, 2014 / 9:38 am

    Sending love from the UK,I know how you feel…… xxxx

    • spooniesophia September 24, 2014 / 2:36 pm

      Sending love right back to you Jennifer <3

  5. James Cooper (@jpc101) September 22, 2014 / 10:44 am

    I soooo know the feeling (and have it today!). I play the uke and mandolin in a worship group at my church and went to practise on Thursday eve (getting ready to play yesterday morning). But on Saturday afternoon post exertional fatigue hit me like a brick wall and also meant I got about 3 hours sleep on Saturday night. So there was no playing (or going out) for me yesterday… grrrrrrrrrrrrrrr 😉

    I’m still knackered today. But in good news, hurrah for blue badges! (and being a bloke, I do most of my shopping online!!!)

    • spooniesophia September 24, 2014 / 2:35 pm

      Oh no James. That’s so rubbish that PEM got the better of you and it prevented you from doing what you love. So sorry!

  6. lennae87 September 22, 2014 / 11:20 am

    I’m sorry to hear that Sophia. It is hard living with a chronic illness, there are good days and then there are bad days. Sometimes it can feel like more bad days then good. Keep trying, and keep trying to stay positive. You will get there!

    Lennae xxx

    • spooniesophia September 24, 2014 / 2:34 pm

      Thanks Lennae, don’t worry I’ll never give up :) hope you’re doing ok! Xxx

  7. rhiannlouise September 22, 2014 / 1:30 pm

    Hi Sophia

    Just wanted to write a little something to let you know that I love your latest blog post? I know that I and many others will resonate with your struggles with frustration. I find myself constantly being frustrated at the limitations that my neurological condition has on my life. I often am so frustrated at my inability to be able to go out on my own; frustrated at being dependant on others. And like you am so frustrated at not being able to handle going to shops when I want to; having to leave because symptoms have become too severe to stay a minute longer.

    Sending love and hugs to you and letting you know that you are not alone.

    Rhiann xx

    • spooniesophia September 24, 2014 / 2:33 pm

      Hi Rhiann!

      Thank you so much for your comment :) you’re so sweet!!
      So sorry you can relate to this post. It’s so hard as we are so restricted in what we can do.
      Keep trooping, lots of love xxx

  8. Lauren September 22, 2014 / 4:21 pm

    I’m sorry to hear you couldn’t manage it:-( it is so frustrating when that happens, hope you’re feeling a bit better today? Xxxx

    • spooniesophia September 24, 2014 / 2:31 pm

      Still feeling pretty rubbish to be honest Lauren, good days are a rarity at the moment. Got to keep going though :) hope you’re doing ok? Xxxxx

  9. Hayley-Eszti September 22, 2014 / 4:26 pm

    So very relatable. Like you, I’ve mostly come to accept what is but we all have bad days and sometimes not being able to do normal things really takes it toll emotionally. Sensory overload and migraines are awful on their own but combined it’s such hell. Sending so much love your way always. <3

    • spooniesophia September 24, 2014 / 2:31 pm

      Thank you lovely Hayley! Yes it all gets too much sometimes doesn’t it?! We manage so well on a day to day basis, we are bound to have days like this once in a while! Sending love right back xxx

  10. Kim September 22, 2014 / 11:25 pm

    I am very sorry that things have been hard. I understand as I have POTS. It is such a incredibly frustrating illness …. people have no idea how hard it is to simply get up and go to the bathroom some days! But I truly believe we can improve in time. I didn’t think so at first, but keep your hope and nourish yourself … your autonomic nervous system needs lots of love & care.

    • spooniesophia September 24, 2014 / 2:28 pm

      Hi Kim. Sorry to hear you have POTS too. No they really don’t, most people take everyday things for granted that we are so desperate to be able to do. Yes I believe that too and we must hold onto that hope!
      Thanks for the comment ❤️

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