#BlogLife1043 - Things undiagnosed people wish you knew..

1. I'm not faking.

2. Just because I don't fit into your neat lil diagnostic bubble, it doesn't mean I don't have it. Not all conditions have the exact same symptoms.

3. I'm not wasting a multitude of Doctor's time, trying desperately to be taken seriously.

4. I'm not crazy. The way I was belittled, talked down too and dismissed by GP's, consultants and specialists, left me a wreck. I questioned my sanity, was I making it up?

4. I'm not exaggerating, if anything I'm not telling you every lil aspect of my symptoms and how it affects me on a daily basis, physically and emotionally.

5. Just because I can do things, it doesn't mean I should.

Certain things cause pain in such a destructive manner that later on or the next day, I can barely do the basics, like moving.

6. Don't tell me or force your opinions on what I should to treat myself. I know what I'm capable of doing. I know what works and what doesn't.

7. Don't act like I have a temporary ailment like the flu. My health issues are aggressive and permanent, there is no cure and it will get worse.

8. Don't try to cheer me up or say Look on the bright side. Being sick is hard. It takes a toll. 

Sometimes I want to fall apart and mourn for my future. Let me be, however you want to cope, works for you. Mine is up and down.

9. Don't call me lazy for wanting to rest and take it easy. My whole body feels like it is permanently straining itself just doing the basics. 

10. Stress makes my pain and symptoms worse, so stop mistreating me and causing me grief! I can do without your power trips!!

If I don't want to do anything or sleep late or just be self indulgent, leave me to it. My body needs it.

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I guess the thing about being ill, you get around to the things you've put off doing.

I found out how to cancel the club membership for Fantastic Services, the pathetic scam artists that billed me and never cleaned my place.

I sent them a scathing email and cancellation request. Hopefully no more stalling and they will terminate it.

I would have liked a refund but it's unlikely. That is done at least. Although I haven't heard back from the nitwits.

Ugh why won't the crampages stop!! I have to do an Iceland order for tomorrow or Saturday but I just want to rest.

At 6pm the pain has stopped for now. I've been playing binaurals all day and have been so uncomfortable and tender.

I didn't know if I was going to write or not. I've finished the Iceland order for tomorrow because there's nothing really indoors and before I would have got a takeaway but now I feel like the money is nearly gone so I'm trying to stick to the essentials.

Having pmt, my appetite is just huge but I had the last of the bland wings and I'm sipping ice water.

I don't really need anything else.

#BlogLife1010 - A lil tip

I decided to do a lil experiment because my face is under attack from the elements, dryness, breaking out, dehydrated I guess, maybe it is just because of winter..

As you know I bought the L'Oreal cleansing milk which is too greasy and heavy to use as a stand alone moisturiser for my combination skin.

I was using it prior to washing my face and that isn't cutting it, my face is still a mess.

I think with milks you're supposed to wipe off the excess with a cotton pad.

I used to use those but it's an unnecessary added expense, with cotton sticking to your face and what's wrong with using your hands anyway?

I decided to see what would happened if I mixed it with the L'Oreal Revitalift cleanser onto the face brush as well as the milk, that is a lil better, so that's how I'll use it.

My skin is more smoother but it's still excessively dry. I have to top it up with the L'Oreal wrinkle expert moisturiser which is a quick absorber and lighter than the cheaper products I buy.

And the only reason for all the L'Oreal stuff is that they were on sale and I get bargains, nobody would sponsor me, as they typically only want positive reviews and I give both good and bad feedback.

At least with the confidential product testing, they welcome both viewpoints because they want to know what works and what doesn't from a majority of different people.

Ugh I had such a horrid night's sleep. I was wrecked but my brain wouldn't switch off so I was gaming and then I dunno if I fell asleep and then woke up but my fingers were painfully throbbing for ages.

I don't usually get that at night, just during the day but the modern day brick phones are not helpful, better to see a big screen but not good to use, if you're delicate and prone to pain.

I must have got some sleep though because I don't feel completely lifeless and after using the face brush, I feel wide awake.

I'll just do the UC stuff and then Looney Tunes will begin their new event at 1pm and I can relax and eat then.

Ugh and literally just as I was talking about not clogging up my email box, Yahoo just wrote and said they are reducing storage, if you exceed that, which it doesn't say how much I've used, you can't send new emails.

I've got loads of stuff saved, stories, ideas, notes, private information.

I hate my advisor so much! 

I was just thinking about the coldness and waiting ages to run the hot tap until you get warm water, if I use the cold it affects me pain wise.

And now looking at my hands I can see they have swollen up, which means they are extra sensitive to usage but I can't stop being active with them so hopefully they will get down to a normal size soon.

I don't really know what provoked them, except using the phone, I've been holding it instead of laying it down too much I guess..

Anyway either with the heating on, the blankie on, I'm still cold, it's not been working well today actually.

I definitely could not survive without a blankie, even a crappy one.

Everytime I get up from it, I'm back to being frozen again.

I read something interesting on one of the pain relief videos, that this person was affected throughout their whole body..

And I thought..... Huh..... Fascinating because I was told the discomfort is only targeted in certain areas, so why you're complaining about other parts it's not feasible, therefore you must be exaggerating....

On and on, Doctors told me, how I should feel, not what I was actually dealing with.

And I've always noticed my pain travels throughout my body not just where "experts" say it should be contained.

It was nice to be validated because the GP/Hospital/Specialists all made me feel like a nuisance liar that was crazy and making things up for attention.

They couldn't be bothered to listen or treat me, so making me feel low was what I put up with for decades.

Diagnosing and dealing with the symptoms myself is so much better.

I may not have studied medicine but I know all about pain relief and human behaviour!

And when you get to a state where you can barely walk or use your hands.....

Something is very very wrong, especially when it begins from late teens/early twenties where you're supposed to be young and healthy, not struggling with movements!!

#AgonyLife3 - Dear SS how do I cope with being ill, knowing it won't get better on a daily basis?

I don't know what ailments you are dealing with but again I'll use myself as an example. Today I strutted out with a spring in my step and a sexy walk.

I was pain free and I knew it was going to be a long day because I had errands and needed things from the market. It's still difficult to get certain items.

I had run out of saline solution for one. Well honestly, I don't have cleaner or storing solution actually. There was a nearby specsavers and they had run out.

I gritted my teeth and had to walk about five minutes to get to the further stores but the pain was creeping viciously upwards. It started with my feet, each step was agony and then hips, back, hands.

Pretty soon I was stopping every few minutes to exhale loudly and hold onto the walls. No more happy movements, this was excruciating.

I was cursing loudly but I made it and then my body stiffened and the pain just moved everywhere. Each action was torture. I got home and didn't want to move.

I wanted sleep and food but of course I made myself something to eat and went to make amendments to the blog I posted today.

Then I did some volunteer chats and stayed busy and productive. That is my coping mechanism.

You see some people are in such desperate need of assistance that it makes me forget my own dramas. 

My point is find a way to vent to either friends, family, partner or on a blog/vlog/journal.

Then stay as productive as you can in your daily routine. Rest when you need too and be excited about your hobbies.

There is no magic fix that will make everything better. I wish I could do it but I can't. Another trick I think about is counting my blessings, possessing readily available food, having shelter and family around.

Certain people don't have anything at all so we should all be profoundly grateful that we do. There is always someone worse off than you.

One last thing, we all have those days where nothing works and it is so bad. On those occasions, I am not saying plaster on a fake smile and get on..

I say wallow and purge it from your system, take some time to acknowledge, Yes being ill sucks. It is a mood killer, not being able to perform routine activities.

Not wanting to leave the house because the pain is unbearable and you feel disgusted with yourself because being indoors all the time isn't normal but at least the pain is manageable.

Just do what you can, listen to sad songs, watch sad movies, cry it out if it helps. I certainly won't judge you for it. I do these things myself.

Then when the moment passes you will have the strength to get back and focus on the next challenging action.

It's okay to be in whatever mood you need too so that you can get through the day. I hope you realise that and that I am proud of you for coping as well as you do.

It doesn't always seem like we can bear it, but we can..Together..

:)

Quack doctors

I'm feeling really conflicted at the moment. Possible changes are around the corner finally but now I have to face my fears and make a doctors appointment.

I haven't done that for many years now because I hate the medical profession that dismisses you and makes you feel crazy.

Like you're wasting their precious time because they haven't been able to diagnose you and you don't fit into anything typical.

When I switched to my third and final doctor. I gave it my last chance. I have been sick since I was a teenager and all they were content to do is make me go back and forth with blood tests.

Telling me that I was making up my symptoms and that I just needed pills and more pills. Antidepressants, painkillers and iron tablets because my body doesn't process iron very well.

I'm someone that doesn't ask for help. I fix myself. I do whatever I feel is best and relying on pills isn't and trying to be recognised as someone with chronic health issues is just as detrimental to my health as the symptoms themselves. 

I started to question my own sanity and wondered if maybe I was making it all up but then I moved and did something routine and the pain was instant and then I knew. 

My pain was real. 

Right at the beginning. I reluctantly accepted the cocktail of medication that I was prescribed because it was necessary. 

However being a numb walking zombie and not being able to keep down food, sleep or feel anything was horrendous. I just felt paranoid and blank. 

Defying the doctors orders. I took myself off them and felt immediately better. It still surprises me how strong I am deep down but I've been through a lot and treating myself naturally without chemicals is far better for me.

Hot/cold gel packs, massage cushion with heat and simply resting is all the assistance I need. As for the panic attacks, my secret weapon is distraction. 

Eyes averted, deep breaths and music playing in my ears. If I don't or can't do those things it is ten times worse and it's all I can do to stop myself from passing out.