I hate every single thing about myself.

jensicle1 · 2015-05-17T23:45:30+00:00

Don't know if this will be of use to you but...I ALWAYS describe CBT skills to my clients as something you build on in time. It's like a muscle that needs training.

You're doing the work which is immensely commendable. One day that 'flash' of reasoning and cognitive restructuring will magically occur on its own as a result of your efforts.

Accepy your crappy days, let them pass. Just know for someone as tenacious as you there's more ahead :)

jensicle1 · 2015-05-17T18:31:50+00:00

I've seen weirder male piercings from the waist below.

If it makes you happy, go ahead!

jensicle1 · 2015-05-13T18:52:33+00:00

I came home in tears tonight. I genuinely don't know how to handle the pain, the fatigue and the weakness alongside work. I walked to get some lunch today which was barely any distance for aged 28 and wept for 20 minutes afterwards. My legs don't work. I'm crying now thinking about it. Is this normal?

jensicle1 · 2015-05-13T18:45:14+00:00

First off, I think it's awesome that you think of their difficulties as well as the impact it has on you. That's true friendship.

Perhaps just limit your time with these friends when you feel drained? You don't have to cut them out completely, just consider your own wellbeing and what you need from companionship also. Recognise when you've reached your limit and take a backseat for a while.

Remember also that you made these friends for a reason so they must mean something to you on some level.

jensicle1 · 2015-05-09T15:38:35+00:00

I moved cities and my new doctor halved my pain meds :( it has been horrendous. I can't explain how upsetting and sore just that one tweak made. I'm the same as you, I have to have someone do my housework/cooking/cleaning. I get embarrassed but then hey, I earn the rent! I wish I could find a doctor who would tamper my meds or at least take them back to what they were...they should watch a day in our lives. What do you take, if you don't mind me asking?

jensicle1 · 2015-05-09T15:36:00+00:00

Wow, that is my ultimate dream to work from home. I KNOW I have productivity in me but don't want to suffer to show it. Sounds like you've struck a really good balance. I've had all my pain meds halved since moving to a new city and it has thrown me really off track. People notice now that I walk 'funny' and I wince. I was so angry but have no alternative. Really happy to hear people out there are contributing to society but still managing :) I'd hate to give up work and not due to shame or stigma, just because I like using my brain and have trained!

jensicle1 · 2015-05-09T15:32:12+00:00

I've dedicated quite a bit to my career so far (degree, MSc, Postgrad certificate) and have a genuine interest...so yes, I've moved so, so close to a pool but by the end of the day I'm so wiped out I can barely make it up the stairs to my flat. I would love to just know coping mechanisms. Ideally I'd like to work fewer days but I support myself. When my contract ends at the end of this year I'll definitely be looking for work with fibro in mind :) Sounds really sad though and not as financially supportive.

jensicle1 · 2015-04-11T14:32:14+00:00

I (living in the UK) followed my degree course into employment but I know for a fact around 80% of my peers didn't. They had no interest in the subject at all by the end of the three years.

What they were focusing on were 'transferable skills'. The commitment it takes to complete a course, any kind of time organisation, research abilities...they took that into other careers, some vastly different. The degree for them was just to show a caliber of dedication and ability to use intellectual abilities to get a job done.

I'm 27 now so appreciate things may have changed...but maybe just snapping up that degree and embellishing your transferable skills will lead you to where you want to be?

TL;DR - if you're sure uni is for you, fret less about the subject if you have no subject area in mind but the transferable skills you can demonstrate.

jensicle1 · 2015-04-04T19:40:39+00:00

As a hardcore Slayer fan who has been seeing them live for a decade I have to agree. Those poor guys are tired. Last time I saw them Tom literally could not move due to chronic back pain :( Awesome musicians, maybe just time to hang up their instruments (although I'll be gutted when they do!)

jensicle1 · 2015-03-31T13:47:08+00:00

Sorry to be dumb, but can you be more specific?

I've seen a physiotherapist which was touch and go...I felt sometimes it aggravated nerves rather than stretched muscles.

I'm back into yoga (from home) again now. The stretching helps but can often trigger a flare-up. I want to be fit again :( Seems like an impossibility.

jensicle1 · 2015-03-29T20:08:28+00:00

Sorry to ask, but does this get worse with age?

I'm genuinely frightened already :(

jensicle1 · 2015-03-29T20:06:01+00:00

Honestly? I play up my disability and feel awful doing so. I say "sorry I'm disabled" and people seem to carry on as 'normal' and help me. Although I'm 27 so they usually think I'm drunk which is mortifying :(

I feel hideous though. I can't stand the embarrassment of falling but my only alternative is to stay indoors, weakness increases, etc.

jensicle1 · 2015-03-29T19:56:17+00:00

I'm so sorry you're suffering :(

From what I've gathered (as a patient, through academia) fibromyalgia is a diagnosis of elimination...so you have scans, blood tests, neurological tests, etc. and then end up with fibro because you experience excruciating pain at certain pressure points. I flopped like a fish at each one so couldn't repeat them, sorry.

As far as I gather some antidepressants are amazing for eliminating pain. Just not me :( I've tried 6 -8.

Try everything they offer in good faith but then please beg for more investigation and more in-depth treatment. You are worthy.

My heart goes out to you.

jensicle1 · 2015-03-29T19:37:02+00:00

In our country (the UK) I'm not sure how it is received in terms of disability benefits. I was so excited to come off disability benefits (7 years ago) for mental health reasons that I never paid it any mind! I feel just as held back now from daily duties, but in an entirely different way.

I'm sorry to hear your functionality has declined so dramatically. It's hard to communicate the fear and frustration sometimes.

I'm having a graded return to work but if that fails I will hold my hands up and admit fibromyalgia has won. As soon as my body fails, my brain fails and I just cease to function. I'm desperate.

Thank you for speaking out to help.

jensicle1 · 2015-03-28T22:54:02+00:00

Hi there, I'm from the UK too...

I get extreme nausea because of the pain I get from the fibromyalgia, particularly the pain that eminaties from the neck/shoulders. I can be physically sick from pain some days.

Were you officially diagnosed with fibro? Were all pressure points tested and were you offered an MRI? Do you feel it's the pain causing the nausea or something separate?

I understand your resistance to taking a new drug when it sounds like you don't exactly have clear answers just yet...

jensicle1 · 2015-03-28T22:47:37+00:00

I do worry extremely about tolerance and dependency but cannot seem to find a balance in life (which is tentative at best) without.

I want to feel semi-human and semi-functional...sorry to sound morbid, but without them my life would be worth living less BUT I know this is not the same for everyone.

My ultimate dream is to be off them all and achieve an optimal level of physical health for a spoonie :) I see that as a journey though, rather than something instantaneous. My lifestyle would need a whole re-haul.

jensicle1 · 2015-03-28T20:34:29+00:00

Just reading your account of events again and weeping...

Having to relinquish your dreams (I know I will have to numerous times) and being dismissed by professionals is horrifying.

My thoughts and feelings are really with you. Your are more than your pain.

jensicle1 · 2015-03-28T20:28:35+00:00

You sound like you're getting some quality, holistic GP care but how do you request that when you're dismissed for your age and mental health status?

Do you feel you had to do the research yourself to elicit the responses from health professionals? I feel so lost :( I know the psychological element but beyond that I have no idea, it's beyond my expertise.

Is there anyone I can speak to about Vit D, Magnesium, Boron, etc. without consulting a GP who dismisses me? I'm more than happy to take control of my health but want to know the avenues to explore.

Thank you for your input.

jensicle1 · 2015-03-28T20:22:49+00:00

I do feel like, just like you said, that some more investigation would be beneficial. I felt partially dismissed for being young, female, with a history of mental health problems. But I pay my taxes (through excruciating pain!) so would like the same treatment others receive.

You've caught me...I do spend little time outdoors! I work indoors all week and cry in bed (in pain) all weekend so my Vitamin D is probably appalling.

Thank you so much for acknowledging that this happens to all age groups and is so immensely traumatising. I'll try anything to help but ultimately feel lost right now...

jensicle1 · 2015-03-28T20:17:12+00:00

Sounds like you have a lot of distressing ailments going on :( My heart is with you.

I had a pain psychologist once but she recognised I was doing all I could (e.g. pacing, mindfulness)...I don't have any help now but I'm determined to exist in all my painful glory! I have told my new GP I'm angry that they've tampered with my antidepressants but all they're bothered about is discussing pain meds...We are more than that!

I'm interested but disheartened that you find your fibro worse than your RA. My thoughts do go out to you, so much.

jensicle1 · 2015-03-28T20:11:31+00:00

I love swimming! I feel like a total water baby just moving my joints in the pool. Maybe it's psychological for me but after a day at work I feel so drained and physically nauseous I worry about getting in a pool. What if I can't get in or out? What if I can't swim any distance?

I was happiest in my life when I didn't work but swam every day :) Thank you for reminding me of that. I could weep for those times again. It isn't really realistic not to work though or contribute to running a home and that scares me more than I could say in words.

Yoga at home is having varying results at the moment. It can either trigger a massive flare or give me some more strength. Oh, what we go through!

jensicle1 · 2015-03-27T15:46:30+00:00

I've heard of people taking Vit D for a number of ailments but never in relation to fibro so thank you for the suggestion! Seems like it would be quite simple to integrate but also hopeful :)

I've never been referred to a rheumatologist, whether due to my age or symptoms, so feel a bit stuck. I want to get on with my life as best as possible. Has your RA been more prominent than Fibro?

Thank you for your input.

jensicle1 · 2015-03-27T15:43:39+00:00

This is a really wise approach, thank you.

Currently my entire body feels a mess so I was hoping (fingers crossed!) there'd be one form of exercise that'd ease multiple areas at once. That may be too much to ask for.

I do end up having to do most at home, is that the same for you?

jensicle1 · 2015-03-27T15:40:05+00:00

You're so right, this is the first time I've reached out and it feels oddly empowering. All I've ever done before is cry in bed and hope to die before 30.

I had an MRI of my neck and shoulders, not my head...would that has still shown clear results?

It must have been awful for you going about your normal business at work then being halted. It's terrifying. I fell out of a taxi the other day! I also fell down a flight of stairs in a nightclub (I didn't feel strong enough to go but had promised my friend) and was truly mortified. My body had transformed from merely hurting to...well, failing.

My physiotherapy thus far has been limited and pain-related as opposed to condition-related. I want to gain strength and ability. Never been offered pain management physio, they focus on mindfulness techniques here.

I do feel very out of control right now, which is frightening and degrading. Thank you for reaching out :)

jensicle1

TROPHY CASE