Posted in ... a bit of that, Chronic Illness

Fibromyalgia

Dear friends and other interesting creatures,

I felt it building. The exhaustion. From Monday to Thursday I realised I was incredibly tired by bedtime. Like there isn’t enough sleep in the world to feed me.

Last night I felt myself crashing. It’s a tired I can’t explain. I took my daily meds to assist sleeping and not having my body present itself as a stiff job in the morning. Usually I fall asleep soon after. Nothing.

I’m so tired that my eye lids feel heavy but still, no sleep. Round 3am I took my anxiety meds. Again feeling more relaxed I should fall asleep, but nothing.

I think I have the feeling that toddlers have when they are over tired down. No wonder they are so grumpy.

I lay down this afternoon and slept about 90 minutes… but again, not a deep sleep either. I woke up with a headache firmly in place (probably from a lack of sleep) and that familiar Fibromyalgia ache all over my body. I really am not keen on a flair up please. Spare me.

It makes me sad. I feel guilty if I ask @SirNoid or my children for help as they work long hours and I feel like a burden during weeks like this one.

I physically hurt and psychologically it makes me feel pretty useless. Really positive on the self esteem chronic illness is.

I try to communicate how my body feels but I know it doesn’t translate well into words. I just sound like I need some cheese with that whine.

I wish you enough,

Wenchy


#wenchytude

Posted in ... a bit of that, Chronic Illness, Mental Health

#NetflixAndChill

Dear friends and other interesting creatures,

I needed to renew a repeat script for Cymgen. A kick ass medication prescribed at my Fibromyalgia diagnosis in 2011.

I’m not always sure what the medication does. Where chronic illness ends and Wenchy starts. I’m very certain of what happens when I do not take my medication!

Even with the best medication, pain still creeps over my body rendering me powerless and incapacitated to deal with simple tasks at times. It steals time and experiences from me. I hate it.

People do not understand. I look fine. Actually I’m fabulous. I have no limbs missing, no open wound to sympathise with. My smile lights up the room I’m told. Sunbeam I am dammit.

I feel a smouldering anger at this faceless attacker. Cowardly, powerful asshole this nonsense is. There is nothing and nobody to direct these feelings to. Acceptance is not mine.

I can tell you that stopping this schedule five drug leaves my brain zapping as if searching for flickering connection. It is an awful feeling. My brain shaking inside my skull.

My skin crawls with anxiety, my breathing becomes shallow and I’m pretty certain others experience my behaviour as a drug addict needing a fix. It would be a pretty accurate observation.

I dropped my local GP an email who usually replies with my repeat script for the next six months.

Instead, I receive an email informing me that he would like confirmation of my illness before providing a script.

I tried to remain calm. A confirmation of my Fibromyalgia diagnosis, Generalized Anxiety Disorder or my ever popular Bipolar status? Just the one or all of the above?

Cymgen I’ve been told covers it all to a certain extend, as well as some of the physical pain.

Yes there are other medication I take as and when the need arises. Xanor is my lifeline for anxiety. I’m prescribed Synaleve and Tramahexal for pain. Neither deliver and I often find myself returning to simple Paracetamol and Ibuprofen.

I phone the doctors rooms. Phone calls usually numb me with fear, but when fueled by withdrawal all things become possible. My brain is zapping, hear me roar.

My tone is agitated. I explain that for the past two years the doctor has had no issue providing me with a script. Saving me the cost of seeing my Specialist Rheumatologist and mental health practitioner that all comes with a very special price. A price I cannot afford.

The doctor persists. A confirmation of my illness is required. I allow my Bipolar self free reign.

I was diagnosed with Generalized Anxiety Disorder and Manic Depression, later to be called Bipolar, at fourteen years of age. I do not remember the doctors name. I was 14. I’m 44 now. The doctor is probably dead. Where would you like me to find confirmation?

The Fibromyalgia is easier. I’m sure the Specialist Rheumatologist would be delighted to discuss my case at a small fee.

I explain that I had not realised it was my last script. I’m four days into withdrawal and I’m not a fucking delight.

The doctor is determined. Apparently it would be unethical to give me the script. A small unmedicated laugh escape my body.

So after two years you have developed an ethical bone in your body? It took you two years to figure out my schedule 5 drug is habit forming? Seriously?

My anger almost results in me resorting to making appropriate accents belonging in local sitcoms.

Now… my son Kev (love that child) gifted me access to Netflix. I have quickly adapted it to #NetflixAndChill. It sounds very urban hip to me. I feel so grown up.

My beloved and very composed 18 year old daughter, Victoria immediately told me #NetflixAndChill has a sexual connotation and could I please stop saying it. “Mom… MOM!”

No. I’m not. It makes me feel very chill and rolls off my tongue. #NetflixAndChill for everyone!

The other day I was all #NetflixAndChill watching a documentary on female killers as one honestly should when you are slightly demented.

This very lovely lady somewhere in the land of the free killed her mother while going through withdrawal from an antidepressant much milder than Cymgen, in my informed opinion.

Least we forget that I’ve been experimented on since I was 14 with new drugs as they were developed. Xanor is clearly a winner as that hasn’t changed and no, the thought if being addicted to this medication does not bother me an inch.

Two things I don’t want to feel. Anxiety and physical pain.

Having #NetflixAndChill-ed my way through female killers in withdrawal, I felt great sympathy for said killer.

Okay… killing people is not cool. Orange will never be the new black with purple hair but I totally understand how your brain zapping and allowing an anxious person to become alot more focus on you, could get your ass #NetflixAndChill-ed!

I did mention that withdrawal is not very ethical. Not once was I told to come into the rooms or go to the Emergency Room. Just zap there in the corner with your crazy eyes Suzanne.

It was late in the day and my body was aching from sitting in a conference all day. My brain zapped and my anxiety was soothed by @SirNoid talking calmly and Liam James making tea. Love them.

It did occur to my funny self that they did not even know about my #NetflixAndChill thoughts! I let them live.

The next day I found a script in my inbox. Very ethically my Liam James collected my medication.

I wish you enough,

Wenchy

Posted in ... a bit of that, Chronic Illness

I believe somewhere in the darkest night, a candle glows.

Dear friends and other interesting creatures,

5am

Yesterday was physically an excessively painful day. From my elbows to my fingers tips which has already taking a beating from the Ankolising Spondylitis, was a no party zone.

The section of my body affected feels heavy. Accompanied by a dull ache that feels like it comes from the depth of the bone, beaming from the surrounding soft tissue. As if someone hit you. Hard. Only it lingers. It doesn’t ease up. Your skin feels as if it is on fire. Your cannot stand to be touched.

Continue reading “I believe somewhere in the darkest night, a candle glows.”

Posted in ... a bit of that, @SirNoid / Marriage / Spouse, Chronic Illness, Thoughts

“What makes the desert beautiful,” said the little prince, “is that somewhere it hides a well…”

Dear friends and other interesting creatures,

I have readers, loyal and long suffering readers that have been around 20 years next year (party?), and when I don’t blog, they text, email or whatsapp me messages to ask “Everything ok?” “You ok?”You gotta love it, right?

Thank you for knowing me well enough not to phone me. No idea however why I have not received flowers, cupcakes or chocolate…. although to be perfectly honest, if you can deliver low carb meals, snacks or general groceries to my house I will be forever grateful. #Smile

Everything is OK. I am permanently completely exhausted. Not tired, not need a break, not take the day off… It’s a much more intense level of EXHAUSTION. Although in all honesty, I do believe @SirNoid and I are in need of a serious holiday.

It is on an I can’t deal, I can’t think, I can’t remember,  I can’t reason, I’m too sore, it’s too much, please help me, without me asking, kinda tired.

Naturally having very close to no iron in my body, does contribute towards my levels of exhaustion.

It is VERY unpleasant and I’ve really fallen very much out of love with having no energy. None. Physically. Mentally. Emotionally. Medically. Every level I may have skipped, please include it, and tick that box.

December and some of January, I was in severe pain, not coming downstairs, just staying in bed, “wish me luck as you wave me goodbye” kinda pain. Christmas, New Year is all a blur really.

I felt very aware of how scary or helpless this must have been for @SirNoid, but also for our 15 year old son Douglas. I think it was one of the first times Doug saw me mid pain attack, crying, asking @SirNoid to help with small things. Pour water, help me down the stairs, covering my legs like I’m 104 years old because the heat and the little pressure helps the pain,  while other times having any fabric touch my skin0 is hell. It is very confusing for all of us!

@SirNoid like many, expresses his helplessness and wanting to make it better, in getting angry, … but I’ve come to realise I don’t know who to direct my anger at. This acceptance bit is a bitch. I’m nowhere near accepting any of this.

I feel excessively exposed and vulnerable… Chronic illness has stolen from me, my husband and children which leaves me with more pent up anger.  Yes, it has been suggested a bit of counselling may go a long way.

I saw a new Rheumatologist &  Specialist Physician this past week.  For someone with “ailments”, I actually do not enjoy going to the doctor.

She was very proper and I liked that she saw ME, and spoke to ME as a person and not a number. The consultation was all consuming and as she predicted by the time I was done,  I felt a small tractor may have driven over me.

She has requested previous documents from other doctors and off course, ran more tests. She wants to compile a time line and see which of the illnesses is doing what, and seriously attack the anemia and find out why my body doesn’t hold onto iron.

The Fibromyalgia and Ankolysing Spondylitis can put on quite a show I tell you!

Looking at my anemic self, she took me off certain meds and gave me more pain meds to take until we have a plan of action.

Grown-ups never understand anything by themselves, and it is tiresome for children to be always and forever explaining things to them. –  Le Petit Prince (1943)

I don’t know the answers, only to try every day . Sometimes successfully and others not.

I wonder if anyone truly knows how much goes into pretending I’m feeling well?
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I wish you enough,
Wenchy

Posted in ... a bit of that, Chronic Illness, Thoughts

Miraculously recover or die. That’s the extent of our cultural bandwidth for chronic illness.

Dear friends and other interesting creatures,

The above quote is from S. Kelley Harwell.

Btw, when you read this, remember that everything good I have done, I did with these issues alongside me, just as everything crappy I have done. I’m still just me.

Living with chronic pain, fatigue (mentally, emotionally and physically) striving to be a loving, supportive wife, involved, caring mother and blossoming DIVA with many roles attached, is a challenging task. Sometimes I drop the ball all together.

For those late to the party, I was diagnosed as having Bipolar Disorder when I was 14 as well as Generalised Anxiety Disorder. At 28 I was diagnosed with Ankolysing Spondylitis which most woman in my family has (including my 16-year-old daughter). At 37 years of age, Fibromyalgia joined the party. The following year I stopped working in a corporate setting. Social Media found me and we have been in love ever since.

Sitting for hours is impossible for me. It feel as if someone used me as target practice. I have a blade stuck between my shoulder blades. I can’t dislodge the stupid thing.

A combination of meds is in place to make life as productive and dull ache instead of stabbing pain as possible. The bipolar part is very much stable with medication, anxiety remains an issue but living a life of not overstepping my physical limitations are much more difficult.

I am HUGELY thankful for my husband who does his best to provide me with medical care, cooking a roast dinner and rubbing my back like he did yesterday. I don’t think it is easy to live with anyone who chronically is in pain, or has an illness that always needs consideration.

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My lower back makes itself known if I am in one position too long. Bending forward, carrying grocery packets, all simple tasks that equal pain.

My body pains. My legs, arms and hips just hurt. Nothing happened to them. They have an illness onto themselves.

One of the most annoying, irritating and completely insane things, is the pain and lack of grip in my hands. There are days I cannot grip a pen, open a water bottle or pour from a jug. Holding a phone, a book or even typing on a keyboard can become impossible. I hate that!

The entire combination of symptoms leaves me with no point of escape. It is completely without warning for the most part. Ta da! I have great intentions but my body does not necessarily agree.

Then, there are times I am just dandy. The pain becomes dull and doesn’t consume me. Medication controls, and I am awesome. My mental state is without any issues, my body is playing nicely and in those moments…. hours, days, weeks, or months… I get a huge amount done. I’m running around and living it!

Unfortunately, the entire process is very unforgiving. For an awesome few days where I run flat out, it may take two weeks to recover and return to dull ache status.

Best part, I look fabulous to everyone most of the time. Oh yes, I’m the great pretender. #wink

I wish you enough,
nocturnwenchysignature