Tag / invisible illness

by ChronicWriter

Recent Hurdle

(Note: This could be distressing, caution advised)

That morning started like any other morning.

Up at 7am, dressed and out the door by 8:15am. I felt good. So good, I had heels on.

As I made the commute to work, I sang my heart out. Singing along to my Disney playlist, I was happy.

About 10 minutes away from the office, I felt a strange twinge in my side. With my insides being as angry as they are, god knows this wasn’t anything new. However, the severity of the pain and the rapid onset was. How I made it to the office, I’ll never know, I can’t remember the rest of the drive. Something was very wrong.

I abandoned my car just outside the building, fearing I wouldn’t be able to walk the distance from the car park. I could barely walk. It took all my strength to stay standing. The pain was so intense I had to hunch over, taking slow steps, like an old lady.

I could hardly breathe.

I stumbled into the building, the first to arrive, I clutched the walls as I staggered to the bathroom. How is it possible to feel like I was going to be sick, pass out and scream all at once? What was happening?

This agonising pain increased from 1-10 in just twenty minutes. I didn’t have time to reach for my rescue meds, to apply a heat pad, to do anything. I was alone & scared. Shaking, I dialled my husband’s number. Knowing he would be busy at work, I held my breath, squeezing my eyes shut against the pain.

Between sobs, I cried for the receptionist to pass the phone to my husband.

In all the time I have been struggling with Endometriosis and pain flares, this was the only time where I’ve made a conscious decision to call an ambulance.

Nick reassured me, told me to call 999. I did.

As I was on the phone to the emergency services, my manager walked in. She took one look at me and took over. She will never know how grateful I am that she was there, with me, that day. I laid my head on the desk, crumpled in pain, trying to breathe, trying to stay conscious.

I felt like I was dying. The pain was so bad. Something was very, very wrong.

Three calls later, we were told help was on the way. It felt like it would never come. Just when I thought I couldn’t hold on, Jade said, “Oh! They’re here now.”

The sigh of relief I released was immense. In that second, I thanked everything that they made it.

Like angels, the paramedics swooped in and immediately took over. They took one look at me and hooked me up to Gas & Air. I then had lots of stickies on, that told them how my heart was doing. It felt like it was aching.

‘Why is this happening? Again?’

I had to shuffle to the ambulance, a paramedic by my sides, sucking on the gas.

It was all hazy as I drifted in and out of pain. I remember Jade wishing me well, giving me my bag and then we were on the way to the hospital.

I laid on the gurney, unable to straighten my legs out. It was like my body instinctively knew to curl into itself, to guard against pain.

I winced against the jerky movements of the ambulance as it stopped and reversed at the hospital. And again I was awash with relief as the ambulance driver opened the doors and I heard, “Is this your husband?”

I lifted my head and our eyes locked. And I cried. I knew that I could collapse because I knew I could lean on Nick, that he would watch out for me and pick me up again.

I was wheeled into A&E and I braced myself for the onslaught of questions…

“What’s your name? Date of birth? What’s happened Aimee? How is your pain now?”

It was the same routine, just a new hospital and new faces. These doctors didn’t know me.

I think every woman with Endometriosis struggles with new doctors, reliving all the traumas, the medical history and desperately trying to make the professionals see how bad the pain is, what it’s like and that it’s not all in your head.

The notion that I might not be taken seriously and discharged is always a very real fear, in any hospital visit.

Luckily, something was shining down on me. I was blessed with a very understanding doctor who could read the pain written all over my face. She overruled other doctors and some less-empathising members of the nursing staff, she held my hand as I cried and rolled around the bed in pain.

She heard my “Please. Please help me.” and answered…

with morphine.

There’s always a question that I dread, not because the doctors have to ask it, but because I have to answer. “Aimee, could you be pregnant?”

Something squeezes around my heart each time, I answer in the negative.

Despite my constant rambling about previous surgeries and cysts and MRI results and ovulation pain stories and pain killer lists, there still seemed to be a lot of confusion about what was actually happening to me.

Some theories were:

  • Ectopic pregnancy
  • Appendicitis
  • Pelvic Inflammatory Disease
  • Some sort of infection

All theories that I’ve heard before, bouncing around my head. Theories that have all been proven wrong. This was my Endometriosis.

The doctors, thorough as they were, insisted on an Ultrasound scan and an X-Ray.

By this point, I had been given paracetamol, a diclofenac suppository and a whole lotta morphine, along with the two tramadol I had taken myself whilst still at work. I know I sound like a drug addict. But that’s just how bad the pain was. I can’t even describe it now, like I’ve blocked it out.

I could barely stand still for the chest X-Ray. I held onto the machine, my legs shaking, biting my lip to keep from crying out. It was all too familiar, all too much. I lowered myself back onto the gurney. The Radiologist hurrying to make a call to the Ultrasound department. She managed to squeeze me in, luckily. That meant that I wouldn’t have to wait for 7 hours for a scan.

I was taken back to A&E before being taken to the ward. I would be admitted. I was shown to a bed, and waited as my husband went to the car to collect my overnight bag (as practised as we are at this, he knew I would need it).

While I drifted in and out of restless sleep, the drugs starting to overpower my senses, the doctor came. I struggled through an internal exam, I gritted my teeth against the dismissal of my accounts. The gynaecologist told me everything would be fine, told me it wasn’t a problem with my cysts, or my Endometriosis. I couldn’t understand what else it could be. Dazed, I returned to my bed, texted my husband, who quickly returned and wanted to speak with the doctor.

She retracted her original comments, telling Nick she suspected the Endometriosis was the culprit, along with an internal infection. I was filled with antibiotics; a large dose via IV and 2 lots of oral antibiotics. What had caused the infection? 

I will never know.

I was discharged the next day, after being told I should have plenty of medication and pain relief at home and should therefore be able to manage the pain. I was ensured that things should start to improve now I was on the antibiotics.

I doubt that there was ever any infection.

When I had failed to ovulate after stopping the zoladex injections, my doctor prescribed me Clomid. This drug works by stimulating the ovaries, to encourage ovulation. I believe that the Clomid irritated my ovary (and in turn, the attached cyst), increased its size, which then aggravated my Endometriosis and caused the flare up. The fluid in my pelvis, could have been just another consequence of this.

And following a tense few weeks, waiting for a hospital appointment, my Gynaecology specialist confirmed this… Right before he offered me a ‘final’ solution.

I think that’s enough offloading for now, don’t you? Just know that I am incredibly appreciative of all the support and light I have received, and I will be alright in the end – after all this will only be a small part of my journey.

xo

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by ChronicWriter

Too much

Last night, I took too much morphine. Irresponsible. Dangerous. Essential. This was not a ‘cry for help’. After all, I’ve been crying for help for 3 years now and it counts for nothing. I did not take an overdose and I don’t want to die.

But, the had pain enveloped me, dragging into my legs and causing my stomach to bloat unnaturally, like a balloon. And I was alone. I am alone with this pain. There are very few people that understand exactly how it bruises me, how it is killing me slowly, day-by-day. Plenty of people have seen me in pain, I am lucky to have such a supportive and caring family, but they don’t know.

I didn’t measure out 5ml of Oramorph. I just unscrewed the cap (which is a chore all on its own because of the child safety top!) and took a swig, a gulp.

As I laid in bed, praying for the pain to stop, praying for the endometriosis to just fade away, my body began to react to the medication, and as I realised what I’d done, how silly I’d been, I began to panic. But I was alone, I had to coach myself out of a panic attack and once again carry on despite of it all…

 

“Barely there-

Standing horizontally, shaking, on the end of my toes,

my face turned up to a starless sky, blocked by a veil of ceiling.

My limbs are heavier than steel,

uncooperative against the unyielding torrent that is flooding my body and my senses.

Almost too much-

My joints creak, protesting my fool’s attempt at slight movements, almost too painful to finish the motion,

and so I give up.

Closing my eyes while my thoughts swim and flail, incoherent,

unable to follow one caution on to the next.

I need to cling to someone stronger, warmer, better than me, I need to be held.

Holding my broken pieces, frayed edges, together.

As I lose control, each action has a little something extra, a little jig, like a tic I am unable to hide.

It is easier to lie still, taking shallow barely-there breaths.

There is what’s left of the strange tang in my mouth, the last testament of my weakness and evidence of my defeat against an unrelenting adversary;

Pain.

And Pain is lonely.”

alone

Clara Lieu Fine Art

by ChronicWriter

I am not unreliable. My illness is.

After having yet another troublesome half a year, health-wise, I once again find myself in a state of unrest. Awaiting further surgery and battling monthly flares courtesy of my Endometriosis, has left me feeling weak and lost. Unable to fulfil my role in my new job, I am unsure of where that leaves me professionally. I could get a part-time job, get stronger, strive for more responsibility and more hours but then I crash down again once my illness dictates I’ve done enough or too much.

I never thought I would have to plan out every aspect of my life, constantly asking myself; “What if I get sick? What if I need more surgery?”  I have never felt more reliable in my life. Lately, it feels like this illness is who I am now, it’s my life and I have forgotten what I enjoy, what my goals were, and who I am. It’s almost as if I need to learn who I am, reconnect with what I want from life. It saddens me that I have forgotten what I was like before my symptoms first started. Was I fun? Full of energy? Outgoing?

I look out from my office window, watching the clouds float by, blurred in the winter breeze, the sun shines to hide the cold. The clouds move so slowly and I feel dizzy as I watch, it’s almost as if I can feel the minutes tick by, me frantically trying to catch up to life.

As I sit in my pyjamas, on a Friday morning, writing this entry, it is difficult to look beyond the 8th of December, the date of my next surgery. A surgery that will remove my faulty ovary and in its place, a gaping hole. What do I fill that hole with? How can I mend myself from the inside out?

I don’t know the answers to these questions yet, I may never know, but I will stumble along as we all do in life, trying to do the best that I can, with people that I love, with patience and understanding. 

 self

 

I regret that I cannot publish more light-hearted posts at this time, but my thoughts are hectic and do not always make sense, but I use this blog much like a journal, and hopefully my sisters with illness can relate and will take comfort in knowing we are not alone. Please reach out to me, if you are struggling today.

by ChronicWriter

Tell me it’s just a bad dream…

anxiety-burn

“No rational thinking can erase the thought or feeling.” – Beethy (the artist)

 

As the panic set in, I laid in bed, my mind running 200 miles per hour and I tried to understand what was happening to me. Am I having a heart attack? I was laid in bed, my husband sleeping next to me, and I was overwhelmed by silent sobs, suffocating, gulping breath so deep my lungs started to burn. I can’t breathe. My hands began to shake as I tried to sit up, hot tears stung my eyes as I desperately tried to regain control. I’m drowning- right here, in my own bed. I could feel a cold sweat develop all over my skin, the cold morning causing goose-bumps on my arms & legs.

This went on for what seemed like hours, but was in fact only six minutes. Not knowing what had triggered this attack worried me more than how it had physically hurt me. What was the matter with me? I don’t have panic attacks. Brushing myself off, I mentally chastised myself & put the kettle on.

A couple of days later, when I was feeling mentally strong enough to analyse what had occurred in the early hours of that morning:

I had been woken from deep sleep by a sharp, stabbing pain in my right side, just under my bottom rib at the front. This pain had triggered such a fear that my mind and body had struggled to deal with it rationally.

My mind had raced from identifying the pain, giving it a name and then rushed to icy thoughts of the future and the “when will it end?” It won’t. The fact that I now know I have active endometriosis on my diaphragm has somehow altered my perception of how my illness will impact my life in the future. In my stricken state, I irrationally, put 2+2 together and came out with 5 (I’m shit at maths at the best of times!)

If I had endo on my diaphragm and my Dr was too scared to remove it, it was too close to my lung, it’s travelled from my pelvis, reproductive system and bowel, up to my diaphragm. It can’t be too long before I’ll have endo in my lungs! Coughing up blood every time I get my period!

A horrific image accompanied this last thought. It was me, fast-forward by 6 months, or a year. I’m crying soundlessly, sitting on the edge of my bathtub, my hand to my mouth. Gently rocking back & forth. Pulling my hand away, there is blood. My mouth forms the ‘O’ of a sob, but I remain silent. Stark red contrast against my pasty palm and crimson staining my teeth.

This image seems to be scorched onto the insides of my eyelids because I see it every time I close my eyes. When I remember the fear and panic and this projection; my focus blurs, my vision distorts and I’m suddenly sucking in air with desperation.

Panic? Anxiety?

I don’t even know what to call it.

But it’s safe to say, I haven’t slept properly since this first happened. Which is why I’m posting this at midnight.

by ChronicWriter

Post-op Realness (graphic!)

On 20th September, I had my second laparoscopy.

Since my operation, I haven’t cried. I have tried to be strong, if I lose it- even for a minute, I may never pull my shit back together again. In the past when I’ve cried, like a sneeze, the people around me cry too. This makes me feel guilty. Guilty for making them sad, guilty for making them despair along with me, guilty because there are people in the world in a worst situation than me.

I was re-diagnosed. This time with Stage IV Endometriosis. My entire abdominal cavity was covered in cysts; on my ovaries, uterus, ureter, appendix, bowel, abdominal wall, diaphragm, a lot of Endometriosis, everywhere. I have seen the photographs my Dr took during my surgery. I have seen the physical damage this illness has caused. Now I’m dealing with the emotional damage.

 

Every day since my surgery, I have woken up in pain. At 6:30am, my husband, who has been a never-shaking source of support and strength, fills my hot water bottle and slides it under the covers while I sleep, and then leaves for work. He has been there every step of the way, and although he cannot take the pain away, he has shouldered this burden with me. He’s been there: when I’ve woken him up in the middle of the night, moaning in my sleep as I struggle with pain, he has waited alone in a hospital room- waiting for me to come out of recovery, ever being the calm in the eye of the storm. As I start to panic and become overwhelmed- I look to my husband, hold his gaze and I’m able to breathe again: “We’ve got this.”

Continue reading →

by ChronicWriter

A small rant about big worries

1 in 10 women have Endometriosis. Around 1.5 million women in the UK are living with Endometriosis. Endometriosis is a chronic condition.

‘Chronic’ is defined as persisting for a long time or constantly recurring. There is no cure for Endometriosis and very limited treatment options:

Hormone treatments such as contraceptive medication (Combined pill, Depo Provera injection, Mirena coil, IUD implant)

Hormone Treatments such as Zoladex, starves the body of oestrogen which places the body in a temporary menopausal state. A lack of oestrogen causes periods to cease altogether. Once the injections are stopped, the ovaries will switch back on and periods return to normal.

These hormone treatments are not appropriate for a woman who is trying to conceive. While she’s trying for a baby, the Endometriosis will run unchecked, causing whatever damage. It could be months before she conceives, meaning months of discomfort/pain.

Another treatment option for women with Endometriosis is pain management. By using a hot water bottle, heating pad or hot bath, pain can be reduced. Mild pain can be treated with paracetamol or ibuprofen. TENS Transcutaneous Electrical Nerve Stimulator machine The electrical pulses are thought to work by either blocking the pain messages as they travel through the nerves or by helping the body produce endorphins which are natural pain-fighters. Some women have stated that Acupuncture has helped relieve their symptoms during a flare up.

Women may be offered the opportunity to have a Laparoscopy, which is a less invasive procedure usually used by doctors to diagnose Endometriosis and also, to treat adhesions and endometrial tissue outside the womb. This procedure provides some relief of symptoms but can recur in time and so some women have to have several of these throughout their lives.

Hysterectomy refers to the removal of a woman’s womb. Oopherectomy is the removal of both ovaries. Both are defined as radical surgeries and are irreversible. If a woman decides on a hysterectomy but opts to keep her ovaries the chance of Endometriosis returning is increased.

These radical surgeries are rarely offered to younger women or women without children. This is because the woman is expected to exhaust every option if wanting a child.

“No gynaecologist will agree to giving your a hysterectomy because you are 25 years old and don’t have any children. There are other things we can try and a hysterectomy is a final option.”

So I can’t get pregnant because I’m in pain all the time, and have Endometriosis. You tell me to consider IVF. Due to pain, I work part-time. I don’t qualify for NHS funding for IVF because my husband has children from a previous marriage. No children, no hysterectomy. So I’m stuck with the pain until I can either afford IVF and conceive or reach an age that is acceptable for me to have a full hysterectomy?

How is this acceptable?

Endometriosis and symptoms in each woman is very different, the efficiency of treatments cannot be measured. There can be no generalised treatment for women with Endometriosis.

Believe it or not- I have had a gynaecologist tell that if I get pregnant it will ‘sort out’ my Endometriosis and pain.

Is it right to pressure a woman into having a baby sooner? Shouldn’t other options be explored?

 When a woman has tried all the pain management options, and the specialist suggests surgery, she will take it, because she trusts the doctor will make the right call.

Is surgery scary? Yes.

Do I have the luxury of being scared? No. I need this surgery because I can’t manage my pain anymore.

Given the ultimatum: Either agree to this treatment (which isn’t guaranteed to work) or suffer with the pain.

Are we compromising our health because there are only limited treatment options?

Endometrial tissue/scarring cannot be seen on an x-ray, ultrasound scan or blood test. Misdiagnosis is often common in a woman’s journey for answers, as symptoms are similar to other health problems. Doctors may end up treating a woman for the wrong illness, e.g. Irritable Bowel Syndrome. There is no way of identifying Endometriosis without laparoscopy. So without this surgery, without the correct diagnosis, a woman could experience years of suffering with pain, heavy periods, fatigue etc.

Although, doctors bear in mind that if the mother has endometriosis, it is likely for the daughter to have it also- it can be hereditary.

by ChronicWriter

10 things you’ll know if you live with Endometriosis

  1. It’s OK to send your spouse on an emergency trip to the chemist, at 11pm.
  2. No, it’s not an alien. It’s just a clot.
  3. It’s OK to eat comfort food and chocolatey treats & not care about weight gain.
  4. You can’t explain your clingy, needy, hormonal outbursts- it’s just another Endo Symptom! 
  5. You will change your outlook on life: “Life’s too short…”
  6. You will get into the habit of picking up Paracetamol & Ibuprofen in every grocery shop.
  7. You will get to know your cycle & body really well, you’ll probs have an app that sings a song when you’re ovulating!
  8. You’ll become the go-to wizard when your female friends have a ‘lady garden’ problem.
  9. Get comfortable talking about ‘awkward’ subjects like: periods, sex, cervical fluid.
  10. Smears/internal examinations don’t get any easier! Despite 100 Drs having a butcher’s at your VJ.

 

*Bonus 11.

It will become obvious that people don’t understand what ‘CHRONIC’ means.

“get well soon” or “oh, you still have that?” or “you don’t look sick”

These comments don’t apply to a chronic condition. I will always have Endometriosis. There is no magic pill. Endometriosis is life altering.

 

BUT WATCH ME KICK-ASS ANYWAY

by ChronicWriter

Side effects of my Chronic illness

  • Spontaneity goes out of the window.
  • There are 84 days out of the year in which I am guaranteed severe pain.
  • Being unable to work full time hours due to chronic fatigue. Having to work part time has a negative impact on my finances. I have had to leave jobs because of my illness, either because I’ve had a lot of time off or that I am physically unable to do the job.
  • I have learnt to accept change.
  • It takes a lot to accept the restrictions caused by my chronic illness.
  • I have received several labels since my Endometriosis became a serious problem- lazy, drug-seeker, attention-seeker, depressive, unreliable. Having to deal with peoples’ prejudices.
  • I know my body.
  • I can’t eat certain foods – it’s great trying to figure out which ones are OK.
  • I get anxiety waiting for my period to start.
  • I am dependent on my husband a lot of the time.
  • I act like a drunk fool when I have to take strong pain relief.
  • Being pushed into contraceptive / hormonal / surgical treatments or deal with the pain.
  • Being pressured to have a baby sooner due to the threat of infertility.
  • Losing friends: There are limits to a person’s willingness to understand.
  • Acknowledging the link between depression & chronic pain.
  • Strain on relationships: spouse, family, friends.
  • Guilt & disappointment.
  • I’ve gotten really good at hiding how I feel, pushing it to the back & concealing my pain.
  • I know my Drs, nurses, A&E staff really well- continuity of care 100%
  • There are times when I hate my body.

fku

by ChronicWriter

Zoladex vs Endometriosis

On 20th November 2015 I had the first of my Zoladex injections to help relieve the symptoms of Endometriosis. I look at this as the final straw. The last option to my growing list of failed attempts to control pain, manage my symptoms.

“Zoladex (goserelin) is a man-made form of a hormone that regulates many processes in the body. Goserelin overstimulates the body’s own production of certain hormones, which causes that production to shut down temporarily.”

Less than a week later I go through a bad flare-up, extreme cramping, agonising pain and bloating. Having to take all my strongest pain medication and struggling to stand. I literally didn’t know what to do with myself, I was having to take heavy pain killers along with sticking heat pads all over my abdomen and back. However, I was told later that this was “normal” and is called a ‘post-zoladex bleed’. This can sometimes exaggerate the symptoms of endometriosis. I was also told that this settled down after a while…

And it did. The first month came and went, I was just heading into the second month, second injection, when the hot flushes started. As the injection works, it imitates menopause. The zoladex injection is like a chemical menopause, shutting my ovaries down so the endometriosis cannot grow or fluctuate in any way – hence, no pain. Or that is the idea.
For a couple of years now I have been listening to my mum (who is mid-menopausal FYI) whine about hot sweats and lack of sleep and mood swings, each time earning an eye-roll from me. I will NEVER roll my eyes at my mother again. EVER.
These hot sweats come and go all day, and they are ferocious and spontaneous. I wake up in the middle of the night feeling as though my blood is boiling beneath my skin. That awful feeling when you get stuck in a jumper that’s too tight? (I felt it briefly last year when I found myself, regretfully, stuck in a dress) I feel that for a split second, when waking with a hot sweat, feels a though I’m suffocating as I’m much too hot.

This is still happening to me. But it’s the lesser of two evils I suppose. Volatile body temperature or constant pain?

So I’m 2 thirds of the way into my course of 3 Zoladex injections. My last one was 18th December; each one isn’t as bad as the last. Although I’m left bleeding, sore and bruised after every injection, it doesn’t hurt as much. I figure I’m used to being a human pin cushion. I haven’t had a period in nearly 3 months now, I’ve had very little bloating and a minimal amount of pain. The only complaint I have are the side effects of the injection.

This tells me that the ultimate treatment, the only thing that can really help me (in the long room) is a hysterectomy. A hysterectomy will push me into early menopause, effectively doing exactly what the zoladex injection does and is a more long-term plan. I’ve finally found something that seems to work. But before I commit to menopause permanently…

 

…2016 is my ‘HAVE-A-BABY Year’

 

Happy New Year!!

 

A xo

 

*I’d love to hear about the treatment you’ve used for Endometriosis… comment below

*Any ideas to naturally boost fertility?

 

by ChronicWriter

An Apology.

Being the partner of someone who suffers with Endometriosis is hard. It’s hard to see the person you love go through so much, seeing them in pain constantly and feeling helpless. It’s difficult to watch her lose a part of herself each month as pain wracks her body or hormones warp her spirit, turning her into someone she’s not.

I can only guess how hard it is, I can’t imagine what my husband has thought or felt during this last year; pre-diagnosis and post. I’m just thankful he’s been with me.

Over the past several months, I have not been myself. I have not been the woman he fell in love with. You might say ‘it can’t be helped, you’ve been through a lot’ which is true in a lot of ways. But why should he have to suffer someone he no longer knows?

Pain turns people into a shadow of the person they were without it. Pain takes hold and destroys the spirit like a cancer destroys the body. A person can only take so much before they give up to despair. Luckily my husband has stood by me through it all.

I have had the Depo Provera injection. This will be the third week after my first dose. My doctor told me it would help with the pain. It has a little. But it’s something else that’s worrying me. The Depo Provera injection says ‘Mood Changes’ on the side effects list. Understatement. They say hormones are a big part of distinguishing who you are. Hormones have a strong relationship with emotions. And being someone who is madly driven by emotion- this has had a huge effect. I’m not making excuses, I’m just trying to understand.

My thoughts are darker, I’m moodier and I have mood swings so bad I feel like I might have whiplash. I have just started a new job which is causing me to concentrate and has taken its toll on my brain which has been on sick leave since December. I’m tired, my husband is tired. I don’t find his jokes as much fun as I used to. The little patience I did have has all but expired. This has started to affect my marriage. I’m pretty sure my husband, family and friends have noticed.

I’m trying my best to be me, it’s hard. But I’m just asking for time and patience and a little understanding. Like people say ‘anything worth having is never easy.’ I thank you for your patience.

But in the meantime, I apologise wholeheartedly for being a bitch.

Sorry.

A xo