When it’s not one thing, it’s the other.

The “Positives” (as some would call it) of my past two weeks, were having one of those weeks nausea free. My stomach medication allowed me to eat anything and everything in sight. I also went to my Doctor for my monthly check-up, and I have gained two kilograms.
I saw glimmers of my old self creep back in. The small improvement made was definitely a little bit exciting. I should probably be more excited, but I guess that I hoped once we hit the eight-month mark, I would have had more answers than I do now.

Baby steps, I know.

On the plus side, I also managed to go to the Grocery Store with my parents yesterday, and zoom the trolley in and out of the aisles. I’m not going to say it wasn’t a struggle to remain standing (thankfully I had the trolley to lean on), but I made it through.

The downside to my past two weeks were the side-effects I got from taking Lyrica. My dizziness hit its worse point, and I struggled with what I refer to as “brain fog”. I sat on my couch for seven days and felt completely numb, except for my neck (which was really the ONLY place I was meant to feel numb).

I can’t explain the fear there is in being as dizzy as I was. My dizziness daily usually scales at 7. This was a straight out ten.
My head spun whilst standing, sitting and lying down.
I thought that if this illness was going to kill me, it would be now.
So, even against my Specialist’s wishes, I made a conscious decision to change my dose to one tablet per night instead of four a day. To my relief, my Dizziness has subsided to its usual level of annoyance, and my brain fog has mostly cleared. I’m not sure my Specialist will be happy about this, but I am an honest believer in the term “you know your own body better than anyone else”.
I have an appointment with an Ear, Nose and Throat Specialist next week, as well as my first big meeting with the Government to organise a Disability Payment.
Both are bringing me anxiety.
I have probably seen close to fifty Specialists this year alone.
I am mentally exhausted.
Telling everyone this story, from start to finish, over and over again.
And, he’ll probably look at me like I am crazy.
I’ll probably pay him $400 to tell me that he cannot help or guide me in the right direction.
It is most likely a waste of my time, but I have to cross it off my list.
My Acupuncturist (the wise one that he is) summed it up pretty nicely today.

“Are you better? No. So, you have to seem him. You have to think of it as just another opinion”

And that I will do. There is a very slight possibility that he may be able to help.

The Government is also making my anxiety soar.
Sitting in a room, being looked over by their Doctors who are probably very narrow minded and have never come across a patient like me before.
I just don’t understand how an hour with them potentially “diagnosing” me, compares to my own Doctors and Specialists working on me for almost eight months and being unable to diagnose me.
It isn’t fair to take one glance over me and tell me that they think I am able to return to work because I appear to be well on the exterior.

Maybe they will surprise me?

Fast forward to the present, and my body is absolutely exhausted from my Osteo, Physio and Acupuncture appointments over the past three days.
My nausea has returned, as well as a worse case of the dizziness.
I also have these really great stomach cramps. I haven’t had them for at least three months.
I am stuck eating mushy food, dry crackers and sips of water.
I have noticed that after you have a rare set of good days, and the bad days return, they hit you a lot harder. I feel unable to cope. My body became somewhat adjusted to the dizzy spells and the nausea, and when they temporarily disappeared and my brain went on a happy high. I forgot what it was like to feel this… ill.

Now, set back into my reality, I don’t know how I managed before.
It seems foreign to me.
I was offered a tiny fragment of my old self, and then it was snatched.
It didn’t even last very long.
I feel robbed, and disappointed in myself… My body has shown me that it has the capability of getting better. Why can’t it just get better and not slip backwards?
I’m sitting here wondering how long it will take before I get another day where symptoms are at ease…

Someone special is taking me on a little adventure tomorrow.
I just hope I am even semi-well enough to go and to enjoy it.

When it is not one thing, it’s the other.

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32 comments

      1. Well I’ll join you from Cali, But on a walk up our local mountain today.
        Take it all in Cass* Don’t get to overwhelmed, I am sure you special friend will allow you to take it slow and enjoy, whatever it is you are going to do.

        Another note* Uggh that’s what I am talking about, this blog. So a guy comments on my post, kinda putting me down, not really but you know. So I accept the comment and reply back, I go to see his blog, he blocks me.
        The End…

        No moral to this story. Oh, I got my disability approved, and the amount. 🙂 I blogged about it, but accidentally deleted it and with now saved draft, I wil have to write again. I guess i’m keeping to blog active. :-p

        Like

  1. Cass, I really feel for you. In my experience of govt involvement with MY illness, I have found that the more “supporting evidence/documentation” you can give them, the harder it is for them to say you’re well. If you can get letters from all your specialists and doctors, confirming your hideously debilitating symptoms, that will help. If you provide a list of all the medical appointments you’ve had to attend since it started, along with a list of meds, that will help too. If you can print off photos of you being ill (migraines always look quite impressive in photos, especially if your eyes etc swell up with them like mine do), and pics of any weird rashes, swellings, etc, that also helps. The last application we had to make ran to a huge number of pages. We included a chart that showed how long it takes me to get from, eg, bed to bathroom, bathroom to sofa, bedroom to kitchen, etc, on a good day, an average day, and a bad day (really bad days, I’m unconscious in bed with migraine, so there’s zero movement ability then). We also counted how many steps it takes me on good, average, and bad days. You MUST be really watertight with all your evidence. If you can find online the handbook and rules that they have to work from, you might find something similar to what’s in the rulebook here. Ours stipulates that even if you can do a specific action, in order to be fit for work, you MUST be able to perform said action “repeatedly, consistently and safely”. Pain and exhaustion will prevent you from doing that, and you need to highlight that.

    Be VERY clear about how badly your day-to-day activities have been affected, and how much help you need just to get through the days and nights.

    If I can help at all, please let me know, I’ll be more than happy to help.

    Lots of love, L. X

    PS One of my few followers has pinched the entire tag-line for my site! :-O He posted last night. I’ve messaged him, but what else can I do about it? Then when I saw the title of this post you’ve just made, I thought, “Oh, no…..” because one post title I had in mind was (line from a song from my youth) “If it ain’t one thing, it’s another”, and that’s just TOO close to yours here! I really can’t stand plagiarism.

    Liked by 1 person

    1. It is so frustrating. I’ve decided to go in there for my first meeting and see what it is that they want from me. I lose my payment officially in August but they want our meetings to start now to get on top of it all. Then I will start preparing the letters. There’s no point in me getting everything ready if they won’t accept it. It’s so hard to prove dizziness and nausea, you know? The entire thing is stressing me out!
      I will, though, get letters from everyone stating what they are doing to me and why.

      Oh my!
      Well don’t mind me – write whatever you like. I have seen others copy my post topics and ideas too. But what can we do? At least we know we wrote the original. I’m happy you contacted him. Hopefully he removes it!
      I hope you are feeling okay today. Thank you for being so supportive, always. And for offering advice! xxx

      Liked by 1 person

      1. You’re more than welcome 🙂 In my experience, applications fail due to lack of evidence, but if you state that x, y, and z are true, they would have to actively disprove this to find you fit for work. I would urge you to do as much as you can before this meeting, if you can. They might be giving you the impression that this meeting isn’t going to define their decision, but (again, in my experience, and it could be different in Oz, I have no way of knowing for sure) they start making their mind up from day one of contact. Take photos, document everything, make copies, and take a set of supporting evidence, with a covering letter, with you – if they refuse to accept it, at least you can add their refusal in to any letters you write later. If you can get your parents to write a letter of support too, that will add a bit more weight to your application. Over here, they seem to think that if we fill our own forms in and write our own letters, then that instantly negates anything we say about impaired cognitive function, so be careful about that. Just put as much evidence together as you can – anything that demonstrates/illustrates to them that you’re telling the truth will help support your claim. ANYTHING. So, include pics of the terrain outside your house if it’s difficult for you to walk on or use walking aids on, measure the distance, count the steps, time it. And include a summary of a typical day. Be very very clear about the amount of pain and distress you go through every day, and anxiety and depression, ALL of it – this is not the time to play down your condition or be optimistic about a swift return to work-wellness! Write down EVERY symptom, EVERY DIFFICULTY. You’ll be surprised how many of these things have been absorbed and adapted to by you. Things you now regard as “normal” are probably not normal for a well person, and you need to see that so you can make THEM see that.

        If you can get at least one doctor’s letter saying that to make you work would be damaging to your health, that will REALLY help.

        Re the plagiarism – as I understand it, WordPress is pretty hot on this. If he doesn’t change it or attribute it properly and link it back to my site, I will probably have to report him, which I’d rather not do :-/

        L. X

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  2. PS Please don’t leave it til this meeting to find out what they need in support of your application, find out before this meeting!

    If yr govt are anything like ours, they won’t do anything to help you, far less tell you what you need to give them to help yourself! Go online, find the guidelines. Ask on forums, speak to others who have been through this process.

    Over here, there are some sites that offer guidance on this subject, so have a look and see what online help is available in Oz. We also have Citizen’s Advice centres, run by volunteers, and if you can find something like that there, go talk to them – it all depends on how knowledgeable the staff are in any given branch, some here are rubbish whilst others have been awesome. X

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    1. I understand.
      I tried calling them to find out exactly what the meeting is about but they didn’t say. My parents and I are just going off of an assumption from what we were told at our last meeting. Hence, why I am waiting until that initial meeting. They have to prebook the doctors here. So, I have a good feeling that when I go in there they will then prebook the appointment from there. They just want to know if I will be applying for the disability pension or not – which I will be. I guess I could try and call again on Tuesday but I doubt they will answer any questions. My specialists also won’t write the letter until they know exactly what it is that they want. It’s a bit of a tricky situation. I understand my specialists side though. They just want to be thorough in what they write to them… and give them all of the information.
      I have a file of all of my bills stating everything I’ve had done this year. That’s something to prove to them that I’ve been quite unwell, and bank statements with all of my appointment fees. Just somethig little but it is proof enough that my weeks are soent at hospitals!
      I’ll see if my doctor at least can write a preletter xx thanks for your help

      Liked by 1 person

  3. No worries.

    Proof of appointments etc always good to add in 🙂 Can you type a list up? I do mine as a month by month list, putting the date, the doctor/specialist, the venue, what it was about (citing specifics like “New /increased mobility difficulties from pain and weakness in legs” or “intolerable side-effects from [insert name of meds]”, “depression”, etc). Doesn’t have to be more detailed than that. Just a record of medical appointments. A lot of applications fail when people suffer in silence and don’t seek help via doctors. At least you’ve done that, and can prove it, so that’s a really good starting point 😀

    I think your specialists should be writing letters citing your symptoms and their possible dx, saying that they cause you intolerable pain and distress which render you unable to work, and if they need any further information, to feel free to contact them. That’s what all mine do. If they had to go through each item of criteria, their letters would run to literally dozens of pages! What the govt want is medical proof that you’re unable, through illness and disability, to work, along with your likely prognosis. So if they say, “likely to be well in 6 weeks’ time” they’ll stop yr claim then. If they can’t say how long it will be til you’re fit for work, which of course they can’t because you have a chronic illness, then they need to say that. If they can’t see you improving enough in the foreseeable future, then they need to say so. I can’t believe they’re refusing to write letters for you until they know what to write! What do they think, that the govt wants to know what colour pants you wear, or if you can knit a tea cosy??? It’s flipping obvious what they need for a disability report! Grrrrrrrr!

    When’s this govt meeting? Could you get a letter from this other specialist this week, or will that be too soon? Could one of the docs at least give you a sick note for the next six months, or however long the max period for sick notes is over there, to take with you?

    I understand how horribly stressful this process is. My GP says our govt have turned the application process into an endurance test, the idea being that if you manage to complete the process, you’re obviously well! X

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  4. PS Please don’t tell them you’ve been “quite unwell” – it makes it sound like you’ve had something mild and transient. You need to say you’ve been too ill to do anything at all, far less work. You also need to say how frustrated you are to be apparently stuck with this undiagnosed illness, because you WANT to be well. All of which is true – you just need to highlight all these things to them or they make their own assumptions. X

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    1. I cannot thank you enough for all of this advice! I will be putting together my timetable and telling them that it has been frustrating. My only wish is to get better which is why I am seeing all of these people and paying for all of these trial drugs and appointments!
      Thank you xxx

      Liked by 1 person

      1. You’re so, so welcome! Btw, I think you might have missed my comment thingy where I said that when you get fit to travel, you’re more than welcome to stay here for as long as you want to. X

        Liked by 1 person

  5. My heart goes out to you, Cass. I know how hard it is when your body “teases” you with a bit of normalcy and then steals it away. I’ve found that it is okay to feel that bit of joy with the normalcy even if it devastates you when the disease catches up. Those moments of joy are what gives me hope that if I keep going I may get better. I cling to hope for if I don’t, I won’t make it HUGS

    Liked by 2 people

  6. Dear Cass, one other way to think about this huge undertaking is that it only takes ONE physician to have what it takes and find the cause(s) of your malady. Stay on course. An answer will be had.

    Liked by 2 people

  7. Your a absolute inspiration. I applaud you for all your achievements and for getting threw some of the tough times too. Hopefully there will be more good news as I read regularly and don’t forget it’s all about the little steps. My heart as ever goes out to you 🙂

    Liked by 2 people

  8. The short crawls forward and slides backwards in progress are so familiar to me because of my fibromyalgia. Also how the bad days feel so much worse after the good. I know how hard that is and I’m sorry.But I am so glad you got a break and were able to enjoy food even for a short time.

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