Crubo Carver’s Neighborhood

30 Things About My Invisible Illness You May Not Know.
 
(I found this on someone's site/blog for Invisible Illness Week so thought I'd fill out my own list too)

1. The illness I live with is: M.E (Myalgic Encephalomyelitis)

2. I was diagnosed with it in the year: 2001

3. But I had symptoms since: 2000, possibly 1999. I was 17 when things started really ruining my life.

4. The biggest adjustment: That I never really got to have a ‘normal’ late teenage/young adult life, and still don't.

5. Most people assume: That making myself do more activity/exercise is the route to improvement/recovery; that I look well. They clearly never saw me when I was.

6. The hardest part about mornings are: The pain, the exacerbated symptoms, the paralysis and often not seeing them. I am mostly not cognizant/'alive' until just gone midday at the moment (and that’s an improvement on most of the last few years!)

7. My favorite medical TV show is: I don’t really watch any medical shows. I can very rarely watch TV.  Maybe Embarrassing Bodies? Hehe, but that's not so much medical IMO.

8. A gadget I couldn’t live without is: my laptop and my mobile phone. Both allow me access to the outside world.

9. The hardest part about nights are: Being awake when everyone else is asleep. It is pretty isolating, especially over long periods of time.

10. Tablets a day: A fair few. It used to be quite a lot more, but my body doesn’t tolerate medication very well and therefore I find they often do more harm than good.

11. Regarding alternative treatments: I believe they are the only way forward for true health.  And I think calling them 'alternative' is misleading.

12. If I had to choose between an invisible illness or visible I would choose: I think both cause problems with how people perceive you, so neither is more advantageous than the other.

13. Regarding working and career: I am incredibly naïve and inexperienced. Except for some months working at a stables when I was 17 (before my brain’s complaints became a full-on tantrum), I’ve never worked.

14. People would be surprised to know: That severe M.E. can be fatal; that I have a very high I.Q.

15. The hardest thing to accept about my new reality has been: That I am missing out on all the experiences I would have had if I was not ill and that I can’t control what happens in my life or to my body or know what will happen from one minute to the next with it.  Feeling/appearing stupid due to the severe neuro and cognitive symptoms.

16. Something I never thought I could do with my illness that I did was: Learn more about myself, who I really am and become stronger in that. 

17. The commercials about my illness: Are non-existent. Apparently thousands of people suffereing and dying and billions of £s lost to the country don’t count for that much.

18. Something I really miss doing since I was diagnosed is: Feeling well and healthy, having luxurious long showers/baths, going outside, seeing people face-to-face, dancing, beauty treatments, horse riding, doing art, keeping fit, sports, being with groups of people etc. etc! The list is unending.

19. It was really hard to have to give up: My education, my independence, basically my life. I had more independence at 10 than I do now.

20. A new hobby I have taken up since my diagnosis is: I am not well enough most of the time to manage any hobbies, daily 'living' is taxing enough, but I suppose using the internet and SL could be one as I didn't really bother with it when I was well as I had little need to.

21. If I could have one day of feeling normal again I would: Fill up every single minute with every activity I love and long to do again. I'd have a high-octane, wild and fabulous time. And you're invited ^_~

22. My illness has taught me: That the malfunctioning body can inflict the most extreme tortures not even imaginable unless you experience them for yourself; that people have a very high capacity for cruelty, ignorance, stubbornness and being selfish; that the populace prefers money to human wellbeing; that doctors don't have all the answers and rarely know best; what fear and being at the mercy of others truly feels like.

23. Want to know a secret? One thing people say that gets under my skin is: “But you were able to do [insert here] yesterday/last week/earlier today/etc”. My illness and symptoms are hugely fluctuating, I have no idea what I will be able to do from one minute to the next so what I was able to do at any given time is not relevant- if I can't do it now, then I can't do it now. Simple.  And by God I'd do it now if I could you fool, think I like not doing things? It’s the most frustrating experience possible.

24. But I love it when people: accept what I tell them about me and how my illness affects me, even if they don’t fully understand.

5. My favorite motto, scripture, quote that gets me through tough times is: I don’t really have any in particular. Perhaps: 'I ask and it is given to me; I seek and I find; I knock and the door is opened'. Mostly I just try to enjoy as many moments of each day as I can.

26. When someone is diagnosed I’d like to tell them: To REST - not to push themselves so they get iller and iller; to avoid CBT, GET, EFT, The Lightning Process, Mickle Therapy, Reverse Therapy and all other 'talking' therapies (-brainwashing yourself to make you think you are well just results in a massive and dangerous relapse, that could take even a year or so to happen, when your body totally collapses from the damage of repeated pushing beyond it's capabilities), like the plague and to believe that even though their illness is serious, very real and chronic, they can get FULLY WELL no matter what people tell them, what people think, what evidence there may be contrary to this view.
Listen to their body and their intuition, don't get persuaded by anyone else to do things you don't feel comfortable with.  Not to stress if you are too ill to see/talk to a friend, if they love you they will understand and not be guilt-trippy about it, if not they are not worth it.

27. Something that has surprised me about living with an illness is: That I still (more or less) like people after being treated like shit by so many; that I'm still ill and 95% bedbound; that I don't kill people who say 'oh yes, I have/know someone with M.E' or 'Oh, I probably have M.E/maybe I have M.E' when talking about fatigue-based illnesses, or the ones who say 'yes I/my friend/family member got through that by doing [insert here] and is doing SO well now'; That it's taking so long and is still a struggle to get the government funded biomedical research and to change popular belief/opinion about M.E; That I could actually have a relationship while being so ill, that someone would want to be with me like this.

28. The nicest thing someone did for me when I wasn’t feeling well was: There are far too many to list them all, but people sending me post and messages and love and support when I'm struggling, even though they’ve often been very ill themselves. People keeping me up to date on their lives without expecting me to respond to emails/post etc. therefore including me in their lives. My Mum's devotion in being my fulltime carer and all that entails - it's the biggest and most energy-draining, stressful and testing job there is, especially on top of her own health problems - she's wonderful, fullstop. My brothers having a laugh with me, fixing my computers and sorting techy stuff out for me.
My wonderful Angel being super understanding and helping in so many ways I cannot count <3

29. I’m involved with Invisible Illness Week because: OK, apparently it’s way past Invisible Illness Week, but I think it’s always a good idea to raise awareness and help people understand that appearances are decieving. I blogged about M.E in May as well.

30. The fact that you read this list makes me feel: Pleased, grateful and amazed that you took the time to read it (I clearly need to have more faith in people, hehe).

I thought I'd already posted this, but it appears not!  So, before a serious post and while my internet speed is still that of dial up due to O2 repairs, here be silliness xD

 Had to add these really cute pics that were taken of Jude last month.  Awwwwww!

Do I see red highlights in that hair?  I think we're in trouble! 

Seriously....does ANYONE really think that I'm going to believe that a person with an email like MAYONAISEKISS is going to send me a free laptop computer?

Are you prepared in case of a natural disaster? What do your plan and preparations include?

Been watching Hurricane Ida, but unless it hooks in suddenly, I don't think it will bother us down around Tampa Bay.  Nevertheless, we must watch for hurricanes from June-November every year.  One of our worst enemies is complacency - it's very important to be ready.

We start by gathering food prior to the start of hurricane season.  Stuff that you can eat that doesn't require cooking or refrigeration - Tuna fish, canned corned beef, crackers, jello packs, lots and lots and lots of water, etc.  This horde is then stored for the next 6 months, along with some basics like matches, tp, batteries, playing cards, etc.  On top of this, we also take stuff like dog food, vaccination records, etc. and have those all ready to go. 

We also ensure all important papers are gathered together in one place and ready to go.  We also set aside money to go to a motel as opposed to a shelter, so we can take our pets.

In other words, for 6 mos out of the year, we prepare to pack up and leave on a moment's notice lol.

Ahhh the price we pay to live in paradise <3

I haven't had many funny tag moments, so here are some odd tweets that I've come across this week...

Stop being so paranoid. No one's out to get you. You're not that important. Here. I'll show you. We'll all show you.

Just had a rad meeting with jon brion. looks like we're gonna work together on the new album! Dreams do come true:•)

"Goddammit, you bitch! You never backed away from anything in your life! Now fight!" - Me. Just now. To my toilet.

Radiohead to race in Breeders' Cup. Radiohead the horse, that is.

Check out the AKC at the Canine Carnival

If a cat wants you to cuddle it, cuddle it. If it's a gym teacher wearing poorly-applied Peter Criss makeup, use your own discretion.

Nobu food is stupid good! Indy recommends Zaru w/ soba noodles. Lucy thrilled 2 see Courtney Cox & Dan Aykroyd. She's still a looky-loo.

sorry again to everyone for the hijacking terrorist who took over my acct!

The fact I have a 64 pack of crayons and *still* have to go to work is a crime against humanity. IT HAS THE SHARPENER IN THE THE BACK.

Semi-colons are the hermaphrodites of the punctuation kingdom.

How do you use the Internet to stay informed about the things that matter to you?

Sponsored by Yahoo!

Oh, this is a good question, particularly because I'm dependant upon the Internet for all of my information.  For starters, I didn't buy into that whole digital revolution and buy a converter box for my television.  Sorry but, honestly, it's really not worth it for me.  When I have to go buy a new tele, then I'll fork out enough for the kind that will go digital, but I really resent being forced to either buy new equipment or pay for cable/satellite tv.  Bite me.

That being said, I turn to the Internet when I want news.  I cheat in that my homepage is set to Yahoo and so I can look at the news there, whenever I log in.  Quite often, I'll find something of interest and chase it down on the various news websites, like CNN.

6 months out of every year (June - November), we have to watch the satellite and radar reports for signs of tropical storms and hurricanes.  For this, I make a daily check on the website for The Weather Channel.  There, I can watch the waves as they come off the coast of Africa and make their way to the west.  I also, occasionally, check the National Hurricane Center but most of their stuff is text and statistics.  I like the imagry of the weather station better.

I use social networking sites, like MySpace, Facebook and Twitter, not only to stay abreast of what my friends are up to, but also to update others on what I'm doing.  Oddly enough, I have somewhere around 40 people following me on Twitter now.

Why??

Hell if I know!  But they're there...  *queues creepy music*

And let me say, for the record, Lou Diamond Phillips tweets a hell of a lot more than I do.  o.O

Obama was elected a year ago today and has now been in office for almost ten months. How do you think he is doing? What's the best thing you think he's done so far? The worst?

Honestly, I'm still waiting to see what he's going to do.  I voted for him and I'm really looking forward to some changes coming from his stay in office but, to date, I've really not seen much accomplished.

This isn't a critisism, however - By the time George Bush finished with this country, it was a mess, and I'm sure President Obama has his hands full just trying to get the basics squared away.  It won't happen overnight.

I just hope we start to see some results soon.

How old do you think children should be before they join social networks like Facebook and MySpace?

Honestly, I think a lot of this should depend on the maturity of the child.  My daughter got a MySpace when she was about 16 and that was how I ended up really learning about it.  I went and did quite a bit of looking into it and then sat down with her and discussed it at length, along with different methods people could use to get her info, what not to tell people, etc.

My son signed up for a MySpace when he was 14, but he signed up for the sole purpose of communicating with his sister, who didn't have the time to communicate with him via other means.  To this date, he hasn't friended anyone else but her, and he doesn't talk to anyone on it.  He seems to have no desire to do so.

The two are very separate styles - my daughter is very social and has a lot of friends and quite active on there, whereas my son isn't.  Personally, I would prefer they went with email to communicate with one another, and completely left the social networking alone.  While I think it's wonderful that kids can communicate like this, the horrors of internet predators make it too risky to feel really comfortable with it.

If you could only drink one beverage for the rest of your life (not including water), which one would you choose?

I'd choose tea.  I'm a big fan of chai but, for the long haul, I think I'd go with a green tea with maybe a hint of fruit.  Peach or pomegranate, most likely.  It's more refreshing and stimulating than chai.