Just Say No!

(This is a re-post. Maybe it can give some Aussies a place to start…)

It seems to me that the government departments that deal with disability payments (from all different countries) have a policy to just reject all claims (like the insurance company in The Rainmaker).

I know that every time I have applied for anything from Centrelink (the Australian version), I have been rejected; and each time, I have either had to appeal or follow-up with many, many phone calls. But each time, I have received (finally!) what I was supposed to receive.

So, today’s post is going to try to make it easier for Aussie FM sufferers to get the Disability Support Pension. (If you are from another country and can write a post that will help others from your country, I am happy to publish it)

DISABILITY SUPPORT INFORMATION

 *** Please note – This is NOT legal advice This has been written based on my personal experience: I successfully appealed the rejection of my Disability Support Pension application.

I have put this together, hoping it will help others in the same predicament.

Basically, this is how it works:

You apply for Disability Support Pension
You must have a total impairment rating of 20 points or more under the Impairment Tables.
To get a rating you must have a permanent condition that is more likely than not to persist for more than 2 years.
You receive Disability Support Pension

 Seems easy, right?

When can a rating be assigned?

An impairment rating can only be assigned for permanent conditions which cause an impairment that is more likely than not to persist for more than 2 years.

A condition is permanent if:

  • the condition has been fully diagnosed by an appropriately qualified medical practitioner, and
  • the condition has been fully treated, and
  • the condition has been fully stabilised.

What does ‘fully diagnosed, fully treated & fully stabilised’ mean?

According to the Guide to Social Security Law (Version 1.191 – Released 12 November 2012), which is run on an Australian Government site and is therefore reliable (although you should always check for updates):

Fully diagnosed and fully treated

In determining whether a condition has been fully diagnosed by an appropriately qualified medical practitioner and whether it has been fully treated, the following is to be considered:

  • whether there is corroborating evidence of the condition, and
  • what treatment or rehabilitation has occurred in relation to the condition, and
  • whether treatment is continuing or is planned in the next 2 years.

Fully stabilised

A condition is fully stabilised if:

  • either the person has undertaken reasonable treatment for the condition and any further reasonable treatment is unlikely to result in significant functional improvement to a level enabling the person to undertake work in the next 2 years, or
  • the person has not undertaken reasonable treatment for the condition and:
  • significant functional improvement to a level enabling the person to undertake work in the next 2 years is not expected to result, even if the person undertakes reasonable treatment, or
  • there is a medical or other compelling reason for the person not to undertake reasonable treatment.

This is the point where most of our applications are rejected.

I suggest that, when writing a letter of appeal (or even your first statement), you address each point clearly and concisely.

When you get past this point, you can move on to your impairment…

Assessment of Impairment Ratings

As part of the qualification for a Disability Support Pension (DSP), a person must have one or more physical, intellectual or psychiatric impairment(s) that attract a total impairment rating of 20 points or more under the Impairment Tables.

For the purposes of DSP, the Impairment Tables are tables designed to assess impairment in relation to work. The tables were revised earlier this year, so you need to make sure that you are looking at the right information. (The Centrelink representative will always ask you if you looked at the most recent tables!)

The Tables:

    • are function based rather than diagnosis based,
    • describe functional activities, abilities, symptoms and limitations, and
    • are designed to assign ratings to determine the level of functional impact of impairment and not to assess conditions.

A claimant who has a total impairment rating of at least 20 points, must also have a continuing inability to work to qualify for DSP.

Now (I have to get a little lawyer-like), as per s 6(9) (this means section 6, sub-section 9) of the Social Security (Tables for the Assessment of Work-related Impairment for Disability Support Pension) Determination 2011:

(9)      There is no Table dealing specifically with pain and when assessing pain the following must be considered:

(a)    acute pain is a symptom which may result in short-term loss of functional capacity in more than one area of the body; and

(b)    chronic pain is a condition and, where it has been diagnosed, any resulting impairment should be assessed using the Table relevant to the area of function affected; and

(c)      whether the condition causing pain has been fully diagnosed, fully treated and fully stabilised for the purposes of subsections 6(5) and (6).

The statements in BOLD are what is important to us. We can use ALL the tables to get a total of 20 as we have a number of conditions that cause our impairment!

Section 10(5) states:

(5)                Where two or more conditions cause a common or combined impairment, a single rating should be assigned in relation to that common or combined impairment under a single Table.

(6)                Where a common or combined impairment resulting from two or more conditions is assessed in accordance with subsection 10(5), it is inappropriate to assign a separate impairment rating for each condition as this would result in the same impairment being assessed more than once.

Now, I don’t expect you to read all the tables (although I did) but have a look at the headings for each:

  • Table 1 – Functions Requiring Physical Exertion & Stamina
  • Table 2 – Upper Limb Function
  • Table 3 – Lower Limb Function
  • Table 4 – Spinal Function
  • Table 5 – Mental Health Function
  • Table 6 – Functioning Related to Alcohol, Drug & Other Substance Use
  • Table 7 – Brain Function
  • Table 8 – Communication Function
  • Table 9 – Intellectual Function
  • Table 10 – Digestive & Reproductive Function
  • Table 11 – Hearing & Other Functions of the Ear
  • Table 12 – Visual Function
  • Table 13 – Continence Function
  • Table 14 – Functions of the Skin
  • Table 15 – Functions of Consciousness

This is where, in your letter/statement, you get personal. Address each and every one of these tables, if they affect you. Give examples. Explain how it affects your life. the more information that you give, the better.

Your Letter

  • Attach every piece of information that you have from any doctors (you can ask them for copies of correspondence to other doctors)
  • Write EVERYTHING down – don’t leave something out because you don’t think it’s important.
  • Try not to write emotionally – it will probably make you very upset to write down how badly you feel but, they don’t care. Centrelink needs it written down clearly, concisely, even impersonally.
  • Spell check (AND have some-one else read through the letter). Basically, Centrelink doesn’t see you as an individual, so this is a letter from one professional to another

I am attaching the letter that I sent to Centrelink as an example. It may not be perfect but it achieved my goal and I received DSP.

I hope it can help some others.

Hard-ly Positive

Well, the Month of Affirmations have come and gone (as has last year). I don’t know how any of you are feeling (no feedback? nothing? I feel like I’m in a relationship!) but it all seems to have been wasted on me.

I went into the month with the absolute best of intentions. I cleaned my house. I bought (and cleaned/cleared) my crystals.* I bought a set of Louise Hay’s Wisdom Cards to have by the door – the idea was to pull one out each day and let it guide me.

wisdom cards

*My Crystals

Bloodstone: Centring and grounding. Brings mystical energies of increasing adaptability and organization, & lessening confusion, stress, & anxiety. Releasing blockages. Good for helping emotional traumas and grief. Good to have several pieces in the home to increase the flow of life energy.

eggsCarnelian: Stabilising, restores vitality & motivation, stimulates creativity.  It gives courage, promotes positive life choices, and dispels apathy. Overcomes negative conditioning & improves self-esteem. Improves analytic abilities, clarifies perception, sharpens concentration. Calms anger, banishes emotional negativity and replaces it with a love of life. Stimulates sexuality. Treats neuralgia & depression. Accelerates healing in bones and ligaments.  Improves vitamin & mineral absorption. Ensures good blood supply to organs & tissues.

Jade: Calms the nervous system. Cleanses the blood. Removes toxins. Excellent stone for the kidneys.

Malachite: Balance, abundance, manifestation & intention.  Amplifies energies of all kinds, both positive & negative. Absorbs energy and draws emotions to the surface.

Ruby Fuchsite: Balancing stimulation with intuition. Brings about awareness of problems of all kinds & use this awareness to find solutions. Helps one understand Love at a Higher level. Helpful with ailments where body functions are out of balance. Amplifying.

Unakite: Balances emotions with spirituality. Provides grounding when needed. Facilitates rebirthing, gently releasing conditions that inhibit spiritual & psychological growth. Supports convalescence & recovery from major illness.

Chinese Lapis: Encourages clarity & objectivity. Allows the release of stress bringing deep inner peace. Facilitate self-knowledge & self-expression. Helps overcome depression, lower blood pressure & boosts the immune system & the thyroid. Beneficial for alleviating migraine headaches & insomnia.

Blue lace agate: Gentle, calming stone that engenders tranquility and grace. Brings with this calm and tranquility a lessening of anger, even deep anger issues, and a calming of nervousness. Considered a happiness stone, as well as one of hope.

Black onyx: Provides strength & support during difficult circumstances. Alleviates fears & worries to help you to feel comfortable within yourself & in your surroundings. Promotes stamina & vigour. Encourages making wise decisions. Promotes self-control to keep excessive emotions & passions under control.

Hematite: Effective grounding stone. Inspires while keeping feet firmly on the ground. Reduces the discomfort of leg cramps & fractures, cleanses the blood & aids blood-related problems.

Pink Agate: Replaces pain with joy, heart healing and heart warming. Calms, comforts and provides security. Eases stress, promotes unconditional love for others and the understanding that you are lovable. Offers positive self-image. (I think everyone needs one of these!)

Amethyst: Aids creative thinking & spiritual awareness. Protective stone. Eases headaches, releases tension, relieves physical & emotional pain. Helps combat addictions. Reduces swellings & bruises.

Botswana Agate: Anti-depressant quality. Promotes understanding the need for deeper meaning. Stimulates the exploration of the unknown & furthers ones quest toward the enlightened state. Soothing & calming qualities. Encourages eternal & constant love. Great for achieving stability & balance. Improves mental functions & helps where issues of clarity and stability are concerned. towerAids smokers who want to quit

Garnet: Promotes good health & vitality. Enhances your love life & sex drive. Fortifies, activates & strengthens the survival instinct. Removes inhibitions. Bestows self-confidence.

Selenite: enhances mental flexibility and enables strong decision-making abilities. Lessens confusion and mental disorientation. A stone of truth and honesty.

But I just continue to be sucked into the vortex that is my life. I know I place myself in positions that I’m sure other people don’t have to deal with – I don’t know how I get here; but I do. I live in a RomCom…but without the happy ending (…so far!).

Now, I sit here watching TV while my housemate, who used to be my lover, and is currently my best friend, texts his new girlfriend (all night); after buying her lingerie while out shopping with me.

Oh….and, I got stood up for a date tonight!

It is so hard to be positive!

Untitled

The Bitch is Back (literally)

It’s 6.10am and I am amazed by how much pain I am in.

work_625175_7_flat,550x550,075,f_purple-painMainly, I am amazed because I forget, in between flares, about how bad these can actually be; how much we actually put up with. I don’t normally write when I feel like this because I really can’t be bothered…and, then when they’re over, it never feels like it could have been THAT bad…WRONG!

So here goes (from toes upwards): both my little toes feel like they are being squished by my shoes (like they are every time I wear any time I wear any kind of shoes) except I haven’t worn any shoes in 3 days!

Purple-Stiletto-Heels (1)The balls of my feet feel like they have spent at least 10 hours in a pair of stilettos partying – once again, I can’t remember the last time I wore a pair of heels. You know those Dr Scholl sandals with the funny nodules – those nodules are growing on the inside of my soles. And there’s a spot where I had a papilloma which is now growing up the inside of my calf muscle, despite being removed when I was twelve. Sounds so bizarre, right? Welcome to my central nervous system!

Every muscle in my calves has cramped up; and I have used every single technique that the physio at rehab taught me, applied every cream and ointment from my box of tricks…everything!

b27293cc-66ff-4474-89ba-f809cfb092ad-tmpMoving upwards (and you may want to miss this paragraph if you don’t like to share too much information): 10 days ago, I suffered an anal fissure due to constipation – yeah! fabulous! Since then, it has felt like my insides have been cramped up completely. I have been taking turns at both constipation and diarrhoea while having a very sore ass the entire time! Needless to say, I am too scared to leave the house, in case my insides should just decide to drop out! Hey! It could happen!

Now the wonderful ointment that the doctor gives you for this lovely and embarrassing condition has the possible (and very probable for us) side effects of headaches and dizziness. Ta Da! I’ve continued with non-stop headaches and dizziness.

greenhealth_07_pmsLet’s move to another orifice. My period is due tomorrow so during all of this I have been pre-menstrual. Aren’t you guys lucky that you don’t have to be anywhere near me at the moment!

You’ll be happy to know that my chest, shoulders and neck seem to fine right now so we can miss those…otherwise this could be one really long bitching session.

great make upThe pain in my cheek and jaw bones (I’m told it is a continuation of migraine pain) is not reacting to anti-inflammatories, or any other pain medication – bring on the Botox injections (and the possible addition of Botox to the PBS in March). And I have had a giant case of face leakage for the last 3 days – and no wonder when you read all of this crap, really.

One can’t help but feel sorry for oneself in this state.

Maybe a sleeping tablet will help and I’ll wake up feeling better?

Happy New Year (?)

51adRpp0LPLWe just had Jewish New Year…so happy New Year, everyone!

The good (or maybe it’s bad) thing about this is that it is a very good reason to have a look at the goals I made for the ‘normal’ (sorry, I can’t think of the right word) New Year and I still have time to do something about it.

My main goal (other than getting cured!) was to lose weight – do you remember my post Bigger is NOT Better? The 10,000 tonne woman has disappeared from my TV screen so I don’t know how she’s going but, although I have been battling some major depression, I have lost 11 kilos. It isn’t the 30 kilos I pledged but at least, it’s a step in the right direction.

Now we had a lot of comments on that post so I’m wondering how the rest of you are doing…yes, I shall name names (Sherri Caudill Lewis, Lara, Kimberley Hatfield- Patty, Valerie Dunlop, Cara Heinze from whohastimeforthegym.com, Sarah Pirtle, Tina, Kate Fuller, Vicki, and FibroLogic) but that doesn’t mean I don’t care about the rest of you…so please, let’s hear your New Year updates.

Whatever…Nothing!

Yesterday, I (with my Mommy) was running late for my pain specialist. I hate running late. It stresses me out. I think it is incredibly rude. But, yesterday, when my Mommy was apologising for making us late, I was just ‘whatever.’

Then I thought about it and I’ve been ‘whatever’ for quite a while. It’s not such a bad feeling – it’s stress-less, very laid back and unemotional. But it’s very nothing.

I also noticed that I haven’t been writing anything personal on this blog – it’s been all about research and studies. It’s because there is nothing.

I think I’m on too many drugs…

When I was first diagnosed, (other than a quick dose of steroids) I was immediately put on Lyrica. Anytime I felt more pain, the doctors increased my dosage…my current Lyrica dosage is 225mg both morning and night.

I also take 150mg of Sertraline for depression – it used to 100 mg but during this ‘whatever, nothing’ stage, I felt that I needed something extra. My GP was happy to increase the dose. There’s also 1100ʮg per week of Thyroxine for my under-active thyroid; the Pill (I went off it (because who’s having any sex?) but my periods were unbearable!); and, of course, there’s all the supplements that we’re supposed to take: vitamin D, Red Krill Oil, D-Ribose, Sam-E, CoQ10, and a multi-vitamin.

Anyway, my point is that no-one tried anything except the Lyrica…why not?

So, having visited the pain specialist yesterday, we’re trying something else: I’m running out of all the supplements at the moment, so I’m just going to stop them as the bottles empty; and I’m going to wean off the Lyrica:

doses

Because this ‘whatever, nothing’ just isn’t good enough. I want more. I NEED more!

Fierce and Fabulous (and Depressed!)

Alisha - Invisible FOne of our fabulous FCK bloggers has been presented with Fighterzine‘s  first Fierce Fabulous Fighter Award: Alisha Nurse from The Invisible F. Alisha is a very worthy recipient of this award – you’ll have noticed I re-blog her quite regularly.

In fact, even before I found out Alisha was a Fierce Fabulous Fighter, I was going to let you read this one:

Depression Awareness Week

It’s officially Depression Awareness Week and I want to ask you to take time to either learn a little bit about this illness, or help raise awareness.

Photo by Gloria Williams

Photo by Gloria Williams

For a very common illness which will affect 1 in 5 people at some point in their lives 1) there are still ALOT of misconceptions about depression, and 2) people don’t realise the seriousness of it.

In case you didn’t know and you’re asking me now, what is depression?

It is the feeling of persistently feeling sad for more than a couple weeks accompanied by other symptoms. Read more about it by clicking on the link above.

Who gets depressed?

Depression can affect anyone. It does NOT discriminate. It doesn’t care who you are, what job you have, how qualified you are, or that you’re determined to be happy. You might be at risk of getting it if:

  • It already runs in your family
  • You have low self esteem
  • You live with a long term illness

But you can also get depressed for no reason. Perhaps you’re one of those affected by a chemical imbalance in the brain, (particularly of the neuro-transmitter serotonin which regulates our moods). Even if you don’t naturally have a lower amount of serotonin in your brain, if you get depressed it may lead to lower levels of this neurotransmitter, hence, the need sometimes for anti depressants.

So you see, it is a real illness caused (or causing) physical changes in the body. It is not imagined, it is not feigned and there is no one remedy that works for everyone.

Make a difference

Stigma attached to depression often causes people to hide. And if people are hiding they cannot get the help they need to get better.

Instead, many give up.

More than 70% of recorded suicides are committed by people with depression. In the UK and Ireland alone  more than 2 young people commit suicide every day.

This reality came back to haunt me this week as my friend almost ended a statistic. But thankfully, she belongs to the charity Depression Alliance which provides key volunter led support. We were able to get her medical help, and she remains in hospital recuperating.

I end now how I started. By asking you to do something to further this cause. Share some knowledge, learn about it, start a discussion, volunteer or donate to my fundraiser to raise money for Depression Alliance. It’s imperative to me because it is something I’ve lived since childhood.

I too have hidden, been ashamed, laid in hospital recovering from failed suicide attempts, been criticised and scorned, even by those meant to care for me. It’s taken me a long time to get to this place of talking openly because I realise someone has to, even if it’s not easy. Even one life saved is a difference made. The life saved could be someone you know even.

Thankyou for reading with an opened mind.

Gentle hugs :)

N.B. The Depict Depression fundraiser art competition is still open. Prizes include Estee Lauder gift sets, book vouchers and Vicky Scott artwork. Deadline Wednesday 17th April 2013.

FIGHT HARD vs FIGHT SMART

We Fibro-Fighters face an uphill battle in our fight against FM so when I read this blog post, by Terry Springer of FibroTrack, I wanted to share. I found it to be very ‘Rocky’-like and motivating…

determinationMany sceptics and members of the “Fibro Ignorant” feel that individuals with fibromyalgia could recover if they would only try harder. They observe that many with fibro do not exercise, are significantly overweight, have terrible diets, live a fundamentally unhealthy lifestyle and appear to be doing very little on their own to get better. They conclude that laziness and apathy are the root cause.  Many believe that individuals with fibromyalgia have brought the condition on themselves and they suffer simply because they refuse to do whatever is required to get in shape and get healthy.

It’s easy to understand why the fibro ignorant come to this type of conclusion. Our society and culture view hard work as naturally leading to positive results. Individuals who put forth massive effort and leverage extreme tenacity are rewarded with big success. This is true in sports, business and many aspects of life in general. Determination and fighting to our utmost ability for things we desire are core values to our culture.

The observation by many that people they know with fibromyalgia do not appear to be fighting hard is both correct and in error. There is no denying that a percentage of individuals with fibromyalgia do not exercise, are obese, eat a horribly unhealthy diet and in fact do little on their own to try to get better. But why is this? There is no one answer. For some, it boils down to the effects of chronic pain and depression plus a lack of education and understanding about what is going on in their bodies and actions they can take to try to correct it.

images (1)For most however, the reality of fibromyalgia is that just living day-to-day with fibro is a monumental effort. Fibromyalgia leaves its victims with a very limited amount of normal “go juice” to distribute on a daily basis. Exceeding the limited amount of energy and focus that patients have available often results in a giant fibro flare-up. Pushing harder and trying to use tenacity frequently backfires bringing on the opposite result from what is desired!

Yet, not fighting hard to do all of the things that make up an effective self-management effort means that the odds of a patient recovering are minimal. Getting better is up to you.

This is a terrible Catch-22! Fighting too hard will make you worse but not fighting hard enough will prevent progress. How do you deal with the reality of not having enough energy and focus to accomplish daily everything you need to be doing? Is it impossible to fight hard enough without pushing too far?

The title of this blog posting is a trick. Fighting hard and fighting smart are not an either/or proposition! With fibromyalgia, the two tactics should be simultaneous and symbiotic. imagesEffectively fighting smart will increase your ability to gain results from your limited capacity to fight hard by ensuring that your hard fighting is targeted in the best direction. You must get everything possible out of your limited ability to fight hard!

Well-structured systems and defined processes form the core operating principles for all successful organisations. They are required to achieve the best results when dealing with any complex ongoing effort. Corporations, government and high-achieving individuals all rely on quality systems to help them best direct their focus and efforts. If you are fighting fibro and you want to recover – you must do the same!

fibrotrack-logoI hope you will check out the ultimate tool and system for fighting smart – FibroTrack.

But regardless, if you wish to make the most of the fighting hard you can do, you need systems and well-defined processes to guide you in fighting smart!

See what I mean? Don’t you just want to start fighting (again/more)?

When the Going Gets Tough…

There’s a lot to appreciate in everyone’s life even when things are tough…

One of the most tragic things about human nature is that all of us tend to put off living. We are all dreaming of some magical rose garden over the horizon instead of enjoying the roses outside the window.

Dale Carnegie

Who wouldn’t rather be happy than sad, positive than depressed, calm than anxious?

But there’s no difference, in fact, between various emotions. It’s all just energy and the surest way to hold onto negative feelings is to judge them, analyse them or try to pretend they’re not happening. We can’t be cheerful all the time – that’s a plain fact of life – but we can be happy.

Even in the darkest hour, we can find the peaceful sanctuary that lies within each of us.

7520956914_db9ee248daIt’s picking yourself up and dusting yourself off and starting again that counts. I guess it all comes back to balance again – there must be enough in life to make our hearts lift and our spirits soar, whether it be a hug from a friend, a beautiful piece of music, a puppy or a child’s playfulness, the sight of the ocean, trees, flowers, a lover’s smile and so many more.

Conquer Your Fear

Subconsciously, we set tests up for ourselves, especially in areas that we know are our weakest. What we fear, we will always see. If you’re constantly worried about money, you will eventually have a financial crisis to deal with; if you’re afraid of rejection and loneliness, you’ll experience relationship breakdown, and if you’re afraid of tangible things such as a particular insect or object, you will see nothing else. So, the important thing is to conquer your fear before it cripples your life.

If you want to overcome a certain issue or problem, for a while, it will get worse as your negative ego struggles to keep it in a dark place. It’s a test of our resolve – will we cave in or hold strong? If it’s the former, we’re simply not ready so don’t lose heart and if it’s the latter, there will be rewards in the improvements in life that will become clear.

daemon_hammerWe humans seem to like to learn our lessons by being hit over the head by a mallet, instead of gently and effortlessly.

Learning is a lifetime’s occupation and yes, we repeat many lessons as we go along. But we must never get impatient or critical of ourselves, just start again and use the newfound knowledge to do better, feel better, relate better, live happier.

Look for the Gift

Prosperity comes in many forms and sometimes it’s heavily disguised. When life seems at its hardest, that’s when we have to look for the unexpected gift.

Have you seen the movie Serendipity? In it the woman says that in Greece, they don’t write obituaries when someone dies; they just ask one question, ‘Did the person have passion?’ It represents risk, or, taking things to another level, adventure.

See the Magic

What about magic? Is that another wishy-washy concept or something real and tangible? I (try to) always believe that things will come out right in the end – and they generally do. Try to see the magic in ordinary, everyday things; look at the world the way a child does or imagine seeing again after years of blindness.

all around you

Self-talk

When you behave in undesirable ways, feel ‘upset’ or have physical symptoms, ask yourself these questions:

  • What am I doing to create this situation?
  • Are my emotions helping or hurting me?
  • What am I telling myself?
  • What are the facts?
  • Am I exaggerating or distorting?
  • Are there other explanations?
  • How likely are my worries?
  • Whose problem is this really?
  • What have I got to learn from the situation?
  • Am I failing to trust?
  • Am I giving in to negative thoughts?
  • Am I running into the future?

Remember to appreciate your daily blessings and not find a whole lot to criticise about your life, which is really quite wonderful most of the time.

Feeling Debilitated? Me, too!

Yesterday, I went to the Melbourne Garden and Flower Show – it was fabulous…but a hell of a lot of walking for a VERY long time. So, of course, my body is avenging itself.

Back in April, we ran a poll to decide the best word to describe the ‘more-than-fatigue’ we feel:

Overwhelmingly, the answer was DEBILITATION!

So, it was very timely that I read this post by The New Normal:

So Very Tired

I am so tired.

I keep saying that to people. At work, at home, at the doctor’s office. I can’t even help myself from saying it sometimes.  But here’s the thing I know, and maybe it’s why I keep saying it: I know that none of these people really understand what I mean.

I remember, vaguely, back in my healthy days how it felt to be tired. Sometimes I’d even be exhausted. I have kids, after all, so there were sleepless nights and long days. So sure I was tired.

Chronic Comic 155It’s not the same now, and I wish there were a better word for this kind of fatigue.  When I say I am tired now it means that I wake up exhausted.  I can sleep for eight hours straight and wake up and feel like I haven’t slept at all.  It means that my body feels like it is carrying around a whole extra person, because my body just feels that heavy, that over-extended.  It means that thinking about my day makes me want to cry because I can’t figure out how I am actually going to get things done.

I am tired to my core.  And I don’t know what to do to get through this.

I guess I should back up to say that I’m in a flare, and have been since January when I caught a cold.  The cold passed, but here I am, swollen and tired and in pain.  About a week and a half ago, I finally emailed Dr. K and asked what she thought I should do.  She said I was probably still bouncing back from the cold (she said something I had never heard before, that it can take us 4-6 weeks to recover from even minor viruses – crazy!) and that I should try increasing my prednisone for 10 days and then we would see where things were. I really thought that was going to fix things.

I called to make a follow-up appointment on day 7 because I still felt awful.  Pain and fatigue hadn’t really improved, despite the extra prednisone.  I went to see her yesterday, and she said, yes it looks like something is going on.  She ordered labs, and pending results, I will likely be increasing the MTX and switching to injectables because there’s no way my stomach would be able to handle the max dose.

Hearing all that just made me more tired.  It will be weeks before an increased dose kicks in and makes a difference. During those weeks I have to stay at the higher prednisone dosage.  It took me months to get myself down to 6 mg and now I’m back to 15. Yeah, I know it could be worse, but I wanted off of it. I feel like that will never, ever happen. My last visit with her I was feeling so much better that we were talking about what we could do once I got off the prednisone. We were talking about lowering the MTX, or getting off the naproxen.  We were talking about progress.

But no. Here we are again. Going the opposite direction.  And I am so very tired, so very discouraged.  And I know that I need to say to my work, to my family, to everyone – I need a break. I need to rest.  But I just can’t. There’s no time to do that, no way to do that now. I have to keep going to work, and keep plodding along, and trying to not be the worst parent in the world, and I just don’t know what to do.

In my head, I know that I have been here before. I know that things will get better and that this is the way of chronic disease. There are ups and downs.  I know all of that, but today, and all the days lately, I feel defeated by this disease.

And I’m just tired.

ENOUGH! (Just for Now…)

This week, I have been filling out forms for the insurance company, calling doctors to get full medical records, and making too many phone-calls. I redecorated my study so my nephew, Z, would have more space – he didn’t like it so I had to move everything back…and I dropped a book-case through the wall! picture wallI had a gorgeous picture wall but, for some reason, after 6 months, all the frames have been falling off. (Command want proof of purchase to replace all the broken frames – who keeps their receipts THAT long, especially if they’re not a tax deduction!) The two giant canvasses above my bed also fell down – at least, they couldn’t break. My Mommy has been bed-ridden for 5 weeks with a bulging disc sitting on a nerve. I forgot what day it was yesterday and missed my hydrotherapy class. And I can’t get rid of this blasted headache!

So, for now, I don’t give a rat’s arse (an Australian colloquialism) about trying new treatments, seeing new doctors, hearing anybody’s suggestions for what I should (or should not) do or reading new research…sometimes, enough is enough! lay-like-broccoliI just want to veg out…Be still like vegetables. Lay like broccoli. (Ok, I watched Pretty Woman tonight).

Just not do anything!

veg-out