painandproblems

[painandproblems]

This is Mr. B! He has stopped off in Thurso during MR B’s Behcets World Adventure. He is the mascot for Behcet’s Disease. The aim of the tour is to help raise awareness, which I think is important because I had never heard of the disease untill I made a friend who unfortunately has it - so I’m guessing you won’t have either! Behcet’s Disease is a rare, chronic (life long) disorder that involves inflamation of the blood vessels throughout the body. It is an autoimmune condition - which means the immune system is attacking itself. All age groups can be affected, but people are usually diagnosed in their 20s and 30s - it often goes misdiagnosed as other inflammatory and autoimmune conditions.  There is currently no cure for Behcet’s - only ways to try and manage the symptoms.  For more information - please visit http://behcets.org.uk/

[painandproblems]

Reblogging this from my personal... 

Rough week ahead!

So I’ve tried having a separate blog for my spoonie stuff, but it’s not really working (although I really do want to make it work), so I’ll just blog on here :P  (and then reblog on my spoonie blog) I’ll put it under a read more on this blog for those who don’t wish to read about my illness and things xD 

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[painandproblems]

So, I have a colonoscopy and endoscopy at the end of the month - 4 days before the pantomime auditions!! :(  It would have been sooner, but the NHS admin staff are the WORST.  My GP thinks I've developed Asthma, but he's hopeful that it's just Pollen Allergy Asthma - due to the rediculous pollen count this year. EVERYONE I have spoken to has said their allergies have been MUCH worse this year. I'm getting a chest Xray on Wednesday though just to make sure - and now I have an inhaler.  My illness has taken a bit of a decline, affecting my whole body now -my back aches, my shoulders are cramping like nobody's business - as are my calves, although I'm on Quinine now which is MAGICAL - but I take it at night so it stops me waking up in the middle of the night with cramps but it doesn't stop them happening during the day really...  I'm so fatigued too, but that's because my iron levels are super low. I'm supposed to be getting infusions soon but I don't know when.  Also, I have 2 new Gallstones, and there seems to be no plan to do anything about them :S 

[painandproblems]

Chronic Illness Community Asks

✚: Do you have an official diagnosis or diagnoses? What are they?

☓: Do you believe in self diagnosis?

☯: Are there any disorders or conditions you think you might have that you aren't diagnosed for?

✞: Do your religion and your mental health have anything to do with one another?

✡: How much do you tell your family about your mental health? How do they feel about it

✤: When were you first diagnosed?

★: Are you currently seeking help from a mental health professional? Do you like them or dislike them?

✱: What's your opinion of the mental health system in your country?

❤: Does your diagnosis/disorder/whathaveyou affect your romantic life at all?

♫: Have you turned to music to help you cope? What's your favorite music for this purpose?

☮: Do you describe your moods or different aspects of your diagnosis with certain terms that other people might not know? Explain.

ø: What are some of the best and worst comments you've gotten in relation to your illness?

✎: How does your illness affect your work or school?

✿: How does being neuroatypical affect your day do day life?

☢: What's your opinion on medication?

☁: What are the hardest and easiest parts of your condition for you?

ϟ: What misconceptions do you see a lot about your condition?

ⓣ: How do you feel about tumblr's view of mental illness?

▼: Do you believe in ableism towards people with mental disabilities?

☠: How serious/significant do you consider your disorder? Why?

♡: How do you feel about people putting their illnesses in their sidebars/freely advertising them?

♋: What's your favorite self care thing to do?

[painandproblems]

For the first time during my nine years of illness, I've had to have someone else wash and dry my hair :S

[painandproblems]

Spoonie Guilt.

I have had one of the toughest weeks I've ever had. After a long hiatus due to my health, I've returned to our local Amatuer Theatre company - because I've been away from it too long and I missed it too much. Every year, they do a fortnight of 9am-4pm workshops for the kids, with the objective of putting on a play at the end of the fortnight. I've been helping with it. I've been on props duty...and the props are all kept in the loft, which you can't stand up in... so I've been up and down stairs and ladders, bending over and lifting boxes... my lower back is not happy with me. I've also been on my knees on the pavement painting things. Yesterday though, I just took light duties and helped do some sewing (I was in that much pain that I couldn't even walk the 5 minutes over to Tesco for my lunch - someone had to give me a lift :P). I was sewing with my favourite teacher from school - which was lovely :) It was really nice to see her. My body is screaming at me and I've been in tears all week - I'm weirdly emotional because of the sheer exhaustion and pain... and I've got to do it all again next week. I am enjoying it though - it's a good distraction andit's nice to feel useful - but it is really taking it's toll on me. My friend is having a getogether tonight... I want to hang out with them all, but I kind of just want to stay at home. Apart from all the illness aspects of everything, I'm an introvert and I just need a day to myself really... but I feel guilty, because it was supposed to be last night, but I said I couldn't do last night, so she rearranged it for today so I was able to go. I mean... I do want to go, just not tonight, if that makes any sense. It wouldn't be so bad if I could just come home, but she lives out in the middle of nowhere so I'd need to stay over. 

[painandproblems]

Reblogging from my personal :)

100 Happy Days; Day 51 A while ago I found this “Mini Home Hospital” tin in a local shop and decided to make it into a Self-Care box… after a few weeks of waiting for things to arrive, it is finally finished. The top photo is the contents of the box… the next two photos are just things I wanted a close up of, and the last three photos are close ups of my awesome Camelot Passport notebook. The contents of the box are (from left to right in the photo); my Pillow Fighters membership card and stickers, a stupid wee card my Dad sent me while he was away, an origami giraffe my friend Lewis made me, Bonjella, hair bobbles, a D20 die that my friend Brian gave me to remind me of my DnD group, tissues and wet wipes, a novelty pen shaped like a syringe, a puzzle book, a fancy spoon, fruit pastilles, bath bombs, a thermometer, a squishy rabit thing that lights up, a stressball, a lip balm, a handout from the Warhammer FRPG game that our DM Brian let me keep as a souvenir, a notebook, my spare TENS machine pads, a mini cross stitch kit, Little Mermaid hair bobbles, a bottle of brightly coloured nail polish, a small melon scented candle, a lighter, my Fencing badges (to remind me I can), a pound note that was the first thing my boyfriend gave me and photos of me and my friends/Dad/boyfriend, although I need to get some more printed, as I have made some very special friends since I had those photos printed. I think I did pretty well fitting everything in!

[painandproblems]

So I've not been updating this blog nearly as much as I should - and I keep saying I'm going to update more and then never do... but this time I really am going to try and kick it off the ground.  This blog is supposed to be all about my story with my illness(es) and a place for people to come for advice or whatever. So I'm really going to try and make this a kind of "journal" of my story.  I saw a Gastroenterologist  3 weeks ago... Who is pretty sure I have Crohn's Disease because my Calprotectin levels are fucking phenominal. Normal is 50, mine came back at a whopping 4515, he almost fell off his chair when he saw those results. He sent me for an MRI - and then is going to do a colonoscopy and endoscopy - under general aneasthetic because he doesn't think I'd be able to tolerate it under sedation.  I had the MRI on Thursday (I had to leave the house at 7am after about 2 hours sleep, and take a 3 and a half hour bus ride to the hospital - although one of my friends came with me, and another friend met me there), and it was honestly one of the worst experiences of my life. I've had them before, but without the dye, and before I was always put in the machine feet first, so it wasn't so bad... So I wasn't really that worried about it. I was worried about drinking the dye though. Some people seem to be able to force themself to drink gross things... but I really can't. I have a bad gag reflex, and I was warned that the dye might be Anaseed flavour, which is one of my least favourite things ever. However, the drinking of the dye turned out to be the easiest part of the whole experience. They gave me a choice of flavours, blackcurrant, orange or lemon.. I went for orange, and it just tasted like orange squash - it was actually quite pleasant. Although it was hard to drink a whole litre in such a small space of time - I almost threw it all up.  So then I got changed, and got stabbed in the arm several times. I don't have a problem with needles, but I have a massive phobia of the crooks of elbows... I hate anything going anywhere near there, and I can't even watch blood being taken or injections being given in the arm on telly. It freaks me out... So I asked him to go for my hand, but he said he'd rather try my arm first. I also have AWFUL veins. They usually have to use peadiatric needles for me, but the MRI department didn't have any. My veins kept rolling, but he kept stabbing away anyway, it was really really painful... Then he tried my hand, nothing, then he tried the other arm and finally got a vein. My arms are still briused and battered.  By this time I was incredibly bloated and uncomfortable... He took me into the scanner, had me lay down and then put this heavy thing right ontop of my distended belly, and slid me into the machine, head first, so I had a bit of unexpected cluastrophobia... So I just kept my eyes close and listened to the CD I'd brought with me (I took the soundtrack to Desolaiton of Smaug)... I couldn't relax though, I was really tense. I rememberd the MRI machine being noisy, but not nearly as bad as that... so all in all it was actually pretty scary.  So afterwards, my friends and I did some some shopping before we got on my bus home. I overdid it, and the walking about was not fun. Neither was the bus journey - every little bump we went over REALLY hurt. I was warned that the dye, and this is a direct quote, "might have a slight laxative effect, but you'll be okay by the evening". UNDERSTATMENT OF THE CENTURY. My body reacted horribly to it. I was a bit bad, and was more liberal with my painkillers than I should be, but I'm sure none of you can blame me. They didn't really help though. When we got off the bus, we all went to play DnD. Fortunally my DnD group, we're all really good friends, I play lying on the couch - and they all look after me really well, getting me hot water bottles and such, so that was nice, and so was the distraction. I must have gone to the toilet about 30 times though, and the pain was just... wow, I've never felt anything like it in my whole life... my belly was also incredibly swollen, and everyone was really worried about me. I'd bought new pyjamas - that's my custom after a hospital appointment, it's my cheer up strategy, so I played DnD in my pyjamas... but when it came time to come home, my friend and fellow spoonie Hannah had to help me get changed. It was awful. I was so embarassed and everyone was so worried. So I went home and cried for a while.  I was a bit better yesterday - and today I'm worse than yesterday but not as bad as Thursday... so I'm thinking I might ring my GP on Monday.  The Gastroenterologst who referred me for the MRI, told me not to wait for the results, and to phone his secretary once I'd had the scan so he could go and look at the pictures... and I did that, so hopefully it won't be too long before I hear about the next step. 

[painandproblems]

#game #of #crohns

[painandproblems]

Reblogged from my personal blog. 

Remission; what they don't tell you...

What they don’t tell you about Remission is; you spend a few weeks, months, or for the lucky ones, years feelings good. I say good, but every spoonie knows that term is relative - you know what I mean. You spend that time being able to do things you weren’t able to do before the Remission Gods smiled on you; able to walk further, go out more often, shower standing up, your apetite comes back, you gain or lose that weight that you needed - you know, all the little things that we once took for granted before we got sick. So, you spend all this time running around doing things you weren’t able to do a few months ago, you’re lower on the pain scale, and you never, ever forget what it’s like to be in mind-numbing, screaming, doubled over on the floor agony, but you do get …further away from it. You become less used to it. So when your remission comes to an end and you start to go downhill and relapse again, everything hits you like a fucking tonne of bricks, because you’re not used to it any more. Your whole body just… gives up. You’re tired all the time, your shoulders constantly ache, your legs won’t hold you up any more… and the pain from whatever chronic illness you suffer (lower abdominal pain in my case) blinds you. It’s the same pain you experienced before remission, nothing has changed, but because you’ve been feelings so “W” (not even going to type the W word - that word is cursed for me) - it feels twice as bad as you remember.  So, that kind of poses the question, is remission worth it? Is a few good months worth the freight train hitting you at the end of it?  Yes, I think it is. 

[painandproblems]

I meant to do loads of posts on here yesterday on IBD Awareness Day, but I failed! 

Hope you feel good today!

Today is World IBD day.

Let’s celebrate all the things we managed to go thought and let’s go out and tell the people what it’s really like to live with IBD.

We’ll never give up until there is a cure.

[painandproblems]

I've been pretty busy because I've been in an Oxycodone enduced remission, and have been grabbing it by the balls and making the most of it, plus I had some family stuff to deal with.  My body is now telling me to slow down though, so that's what I'm going to do, meaning that I now have more time for this blog... I just need some ideas of what to post about xD  Sorry for being a bit rubbish lately, but I am back now.

[painandproblems]

TIPS FOR DEALING WITH PEOPLE IN PAIN

TIPS FOR DEALING WITH PEOPLE IN PAIN 1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up. 2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it. 3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid. 4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much. 5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation. 6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward. 7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt. 8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others. 9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down). 10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain. 11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort. 12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.

[painandproblems]

THE ENDOCRINE SYSTEM + INSULIN RESISTANCE EXPLAINED

The Endocrine System

The endocrine system is the system of glands, each of which secretes different types of hormones directly into the bloodstream in order to maintain homeostasis (which from as far as I can tell, is basically the state of living and breathing.) 

Kinda like our nervous system, the endo system is an information signal system, sending messages all around the body. However unlike the nervous system, it’s a little slower off the mark and the effects are slower to initiate, but the responses can be prolonged, lasting from a few hours up to weeks. (This is why it takes about a month or two to check on your thyroxine levels when your dosage or weight changes) Lazy little sucker!

So your brain says, “close your eyes” your response is instant. Your thyroid says, “I’m in overdrive” it can take weeks for your body to react and let you know it’s in trouble. Got it? I think I do… 

So, the endo system is secreting hormones - hormones as all of us here know, are very powerful things as they regulate various functions such as our metabolism, growth, sleep, mood andtissue function. Hormones are substance released from the endocrine tissueinto the bloodstream. Once in the bloodstream, they sail on down to different targettissueand generate a response. Sounds like the quality of our tissue is pretty important for us ladies then. (a quick google search tells me that vitamin C, folate, spearmint and parsley are all helpful for tissue growth. Something to try!) 

Ok, so what bits of our bodies, or endocrine organs, are part of the endocrine system?   

Click here to read the full article at the source: http://www.health-hunter.com.au/blog/2013/9/26/the-endocrine-system-insulin-resistance-explained

[painandproblems]

Another one of the posts I made on my personal blog for Invisible Illness Week last year

When the Invisible Becomes Visible

You can see all of my Invisible Illness Week 2O13 posts here. 

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[painandproblems]

As you've seen, I've decided to reblog/repost all the posts from my personal blog that I made for Invisible Illness Awareness Week last year before i set up this little blog...  This one was a long and emotional rant, and it was hard for me to get out and into the "public" veiw, but that was the whole point of Invisible Illness Awareness Week.

Why A Healthy Person Would Pretend To Be Chronically Ill.

TL;DR Answer; They wouldn’t. They have nothing to gain, and everything to lose. I’ll exapand under the cut - I was saving this for last (unless anything else pops in my head before this is all over), because it has the potiental to be very long and very emotional. You can read all of my Invisible Illness Awareness Week 2O13 posts here. 

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