Hello, how are you?

Hello there!
It has almost been a month since I decided to take my little holiday from WordPress, so I thought I would pop in and say hello.
I appreciate all of your emails and kind wishes, and am in disbelief that I have still accumulated new followers without posting anything new.

I must admit though, I have considered taking down this site many times over the past few weeks. I have even regretted writing again and have wondered if it has caused me more harm than good to be raw and honest in communicating about my journey.
Many of you have emailed asking questions, which I thought I would quickly answer in the best way possible.

Did you get help from the Government/how did the meeting go?
I was lucky enough to get a very kind woman who explained that I am not allowed to apply for a Disability Pension as of yet, but she was more than happy to continue my current temporary payment, fortnightly, until early next year. It is not a Disability Payment, and it is not a large amount, but it is money nonetheless and I can put it straight towards my appointments.

The meeting itself went fine. She was very understanding, and didn’t feel the need to look at the folder I created (which kind of annoyed me because I put SO much effort into getting letters from Specialists and statements, results etc). We spoke briefly about my past job history, my immunity, my studies and symptoms and she was sympathetic towards this being a postviral condition. She also told me that if I am still unwell in January, I can have an extension.

How are you feeling?
I feel better than I did eight months ago.
The only setback I am currently having are rollovers of viruses. It is Winter here, and I seem to be getting the flu every fortnight. I recover for a week, and then get it again. Viruses unfortunately go straight to my stomach and destroy any consistency I have had with eating. Not to mention, it also further weakens me. I am also not allowed to take antibiotics or cold and flu medication so I am trying this au naturale system.

Apart from the neverending viruses, I have been better.
My nausea is only after eating, as opposed to every second of the day.
I have been able to eat three consistent meals per day.
I have been getting out more, little by little and am able to stand on my feet independently for longer. I still rely on help from others, and I get extremely tired quickly, but the dizziness is nowhere near as bad as before. I hope it remains this way.

Are you any closer to receiving more answers/what are you trying next?
My Specialist and I have agreed that we will probably never find a straight forward answer. I definitely have Gastroparesis, but it came back as merely mild. My symptoms have been quite severe, which brings us back to the theory of Post Viral. Every other test I have had has come back clear, and we have done them over and over again.
Which brings us to the conclusion that I need to focus my time on management rather than answers. I may never be the same again, but eventually, I will have to go back to work and “living” in the best way possible. So, all of my time and energy has been spent on trying to find my norm. I have simplified all of my Specialists:
Gastroenterologist for my Stomach.
Acupuncturist for my stomach, neck, and general wellbeing.
Osteopath for my neck.

What have you been doing with your time?
I have been trying to get out a little more than usual – to the shops, to parks, even for car rides. I have also been doing a lot around the house – getting my body used to movement. I have been watching reruns of Hart of Dixie and Pretty Little Liars (I need some trashy female drama to keep me sane), and spending a lot of time with my family.
I have also been cooking more often, and obviously attending my weekly appointments.

I know it doesn’t sound like a lot, but considering where I was eight months back, I actually feel slightly stronger.

Do you still find yourself having bad days?
Of course.
Although I have made improvements, I find myself in the same depressing slump I have been in in the past. I don’t think that feeling will ever subside. I still have days where I can’t get out of bed, and I am extremely frustrated with myself for making improvements and then falling behind. I still have days where I want to give up because I feel that life isn’t worth it. I am still struggling to cope with losing so many “friends” in a short space of time… when I really needed them.
I still crave the old life I had, and all that I am missing out on… but I am trying to cope in the best way possible. I don’t know if it is the right way, but what really is the “right” way of doing this?

Has anything new happened?
I have put on five kilograms, which is exciting. I hope I can keep the weight on.
I found a miracle oil called “Kwan Loong” from Singapore which temporarily numbs my neck from the throbbing pain. I have tried many heat activated products before, with no success, but this one works wonders. The main ingredients are Menthol, Lavender Oil and Eucalyptus. A few of the ingredients in it are probably not recommended for longterm use, but if you are using it sparingly and it brings you relief, then I don’t see a big problem.

I also recently reconnected with someone I haven’t spoken to in about four months. It was a bittersweet feeling.

I think that is all my brain has time for. I am currently quite dizzy and struggling to breathe through my nose, or swallow due to what feels like razorblades in my throat.
I hope you are all as well as can be and have found management, relief or even answers.

I haven’t decided if I will continue to write or remove this page. I am quite enjoying the time away from Social Media. It has also helped me immensely with my neck problems and dizziness… but when I know for certain, I will be sure to inform you.

Sending my love to those who are experiencing bad days, and know that you are in my thoughts!

C xx

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21 comments

  1. Haven’t read many of your posts yet I was encouraged by this one…your willingness to share in the midst of many potential setbacks and actual discomforts. Keep going, you’re saving lives.

    Liked by 1 person

  2. Last night, I had a dream that you finally posted something. I didn’t think anything of it until I saw the notice in my inbox just now.
    Tootired and sick to say much more right now, but I do want you to know …..

    I don’t know why but “you”, what little I even know of “you” have taken up residence in ky thoughts and prayers recently. Without delving into the abyss of substantial, dramatic tragedy of my life …. it seems noteworthy.

    I guess what I mean is

    1) I’m glad you didn’t delete this page. I understand what you mean about social media and the unspoken toll it takes on us all. Thank you for hanging in here, you ARE making a REAL difference in REAL people’s lives.

    2) I’m hoping we have more usueful and encouraging things to say (keeping in mind that encouragement can come in the form of desperation, defeat, complaining, and abject negativity).

    Goodnight, for now. Sleep is the best ofall coping mechanisms … or as I have heard:

    “Like death, without the commitment.”

    Cheers to that.

    Liked by 1 person

  3. I had been thinking about you and wondering how you were doing. I can understand, though, how some time away from social media can be a good thing. I hope you won’t delete the blog even if you post much less often–or even if you stop posting completely, because I think the blog has a lot to teach people.

    Wishing you better health and peace in your heart,
    Q.

    Liked by 1 person

  4. I’m glad to hear you’re better, at least a bit! I understand your feelings about this blog, I sometimes feel like writing mine makes me concentrate too much on my problems and not on the rest of the world, so taking a break or just writing about something completely unrelated helps a lot. But I actually hope you won’t take it down, I really want to (hopefully) see you get better :-). I hope you’ll keep getting better and eventually start a new beginning in life!

    Like

  5. Good to hear from you, I’m happy progress is being made. Soothanol was ordered for me, learnt it works wonders for pain but unfortunately I’m allergic to menthol and its 12% menthol. Hugs

    Like

  6. Look at all these people who love and care for you. You may not be as well as you want to be, but I hope you fine comfort in that! xo

    Like

  7. Happy to hear from you again, Cass. I’m sorry you’re still struggling. That’s great that you’ve put on some weight and found some things to help you. I used to watch Hart of Dixie as well though I hated the last episode! Wishing you all the best!

    Like

  8. Was just thinking of you. I hope you don’t take down your site or posts although I know it is scary and vulnerable being ‘out there’. There will always be someone in similiar situations ( maybe not exact circumstances) but in struggles to fight and cope and move through. Social media has been helping me and many others validate one another in different ways. I have always supported your blog though I do not know you. But whatever you decided that YOU need, I wish you the best.

    Like

  9. It was very nice to see a new post from you, especially as I’ve been finding myself spending less time on this site recently…
    I’m happy to see that you are improving, and I hope things continue to get better!

    If you do end up deleting this blog, I completely understand and support that decision, but first I just want to say thank you for creating it, and I am very glad I was able to follow this portion of your journey. (:

    Like

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