This is the face of Chronic Illness…

Do I look sick? This is the face of an invisible chronic illness. 

Inspired by indisposedandundiagnosed

I got married!!!!!

20th December 2015, my wedding day – 1 week out of hospital

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January 17th – 1 day post-laparoscopy

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May 2015, surviving on heavy pain meds

2015-05-29 17.09.20

End of May 15 – Pain umanageable, triggers SVT

In half of the photos in the post, you wouldn’t even know that I was in severe pain- taking drugs such as Tramadol or Oromorph just to be able to stand upright. In the other half, it is plainly obvious that something is not right. When I hear: “But you don’t look sick”, something inside me shrivels up, like I have to prove that I’m ill, as if I don’t struggle enough each day…

Let’s see your picture; what is the face of chronic illness?

A xo

It’s OK to ask for a 2nd opinion

I have been struggling with extraordinary abdominal pain, fatigue and heavy bloodloss which eventually led to being diagnosed with Endometriosis.

I had my Laparoscopy on my birthday in January 2015. Since then I have still had constant pain. Everyday. It has been an exhausting journey. I have been told to try for babies sooner rather than later, I have been told my illness is chronic and I will have to live with it for the rest of my life.

Now, in my personal circumstances, we always knew it wouldn’t be straight forward for me to conceive, my husband and I had planned to save up and go for a clinic where he would undergo surgery. This would be in a private clinic as it isn’t available on the NHS. My diagnosis then put a time-sensitive pressure on us to conceive, which has not helped my recovery or state of mind at all! How am I going to save £3000? I have left full-time work as I can’t manage my pain during a 40hr work schedule! It’s impossible. Hence, my mood deteriorated.

I have been in constant pain, having to take very strong pain killers; called analgesics. The side effects include: drowsiness, nausea, headaches, itching, insomnia, changes in mood and they are just a few. When on these sorts of tablets, I would lose hours, days at a time, not being able to function, falling asleep, being emotional, it was a nightmare. And what’s more, I got tired of visiting my Dr and being met with a blank expression and the ‘trial & error’ merry-go-round; “try this?”

I ultimately reached rock bottom. I was crying all the time, I was scared I would lose my job, my family were all worried about me getting addicted to these tablets.

THEN… 

A good friend & relative of mine did some investigating and told me to register with a different Doctor’s surgery. At this new surgery, I was to ask for Dr D (confidentiality!!) and that he specialised in symptoms like mine, women’s health etc. What? Why hasn’t my Dr mentioned this before? So I went and registered, filled the forms out, spoke with a lovely receptionist who listened intently to my story and signed me up with Dr D as my named GP. Yes.

In 10 minutes, Dr D was able to give me more reassurance and information that in the 18 months previously. He told me that my endometriosis was not under control. He told me that the next stage would be a chemical menopause like Lupron injections (ermm…No Spank you!) and then it would be surgery; hysterectomy. He said that if I was suffering like this at 25, it wouldn’t be much better at 35, and we would be looking at surgery definitely. He gave me other options about our fertility problem and when I researched this at home, it seemed more practical and much more achievable! He understood my need for pain medication, reassured me that I was using them correctly, and when I asked for slow-release Tramadol (thanks to my Twitter sister @BattleWithEndo!) he didn’t hesitate to sign the prescription.

Dr D has given me a plan, a path to walk and a destination. After so many months of working around lost in my own pain and hating myself and the health system, it feels so good to have some clarification.

By no means am I pain-free but it’s manageable. I am only part way through my journey, but at least now I’ve got a map and things have started to show improvement. My bleeding seems to be settling, I have a little more energy (thanks to vitamins!) and I don’t have as many as the nasty side effects. I’m only taking FOUR tablets a day now.

I feel like me. At last.

There is hope. Don’t feel bad for going to a different Dr. Your health is important and you are entitled to expect and ask for what’s best for you.

A xo

No diagnosis? Misdiagnosis!

Can someone just sling a spanner in the works? Please?!

Below I have drawn a pretty (or not!) picture of what having endometriosis entails and how each things affects the next. It literally effects every aspect of my life. As you can see, it’s a viscious cycle.

image

I’m unsure what can trigger the pain as I can have it through the night, when I open my eyes in the morning, at work, after the gym, anytime. I have read up online and through reference books, I have spoken to hundreds of women in online forums and support groups and don’t seem to be any wiser on how I can help myself!

Before all my symptoms became too much to bear, I had a positive outlook on my life, positive opinions of the healthcare systems and believed I was in good health.

How naive was I? For the past 15 months I have been greeted by blank faces, questioning looks, even expressions of doubt, when seeking help from the healthcare service. I am very much treated on a ‘try this’ trial and error basis, I seem to come out of the Dr’s room feeling more confused than when I went in and have yet another prescription in my hand. I have seen on the news that Doctors are sometimes over-prescribing and overdiagnosing their patients, which is bad. But I must be on the other end of the scale as I have been underdiagnosed. I have recently had a hospital admission where the on-call gynae actually looked surprised at seeing my surgical scars even after I had told her my sad tale. As if I’d lied about it?!

I have reached an all time low in my life and have been crying in Dr’s rooms for months asking for help. I have expressed my desire to have an hysterectomy at 24. I just want it to go away at this point. I have told them I find no joy in my life anymore. Their response? Anti-depressants. More meds.

I don’t like using pain killers so how am I supposed to react to this? It scares me. I am constantly being reminded that ‘these drugs are addictive’ and ‘be careful how many you take’ and so I try to avoid taking them if I can. I can’t always manage it. If I don’t take the pain medication when I need it, I’m literally in the foetal position for hours. I am now at the point post-diagnosis where I have accepted that this is how I am, which is depressing in itself much less without the pain.

Anti-depressants were the last straw. I cannot start that medication. I have decided to try and take control of my life. Hoping to.

I have been to the gym this morning, taking it slowly, I have gotten home and my stomach has inflated to the size of a beach ball, my back hurts, my pelvis feels too wide for my body and I am so tired. All of the time. Tired of my body fighting itself. Pretending to be ok, everyday, is exhausting. I just want to be as normal as I can.

I’m just about done with this shit.

A xo

My first time- Acupuncture

When I was told that I’d have this illness for the rest of my life, I had the naive ideation that I would just take some pills, some Feminax and everything would go on as normal. Oh, how wrong I was. Chronic pain has seeped into all the cracks of my life, bringing with it- its entourage; fatigue, depression and an unhealthy reliance on pain killers. I am not addicted to pain killers, not yet, but I do rely on them most days. I have had to search all over the web, looking for natural methods to ease the pain, alternative medicines that don’t make me look like a zombie, so I don’t lose days at a time during my ‘pain storms’. For this I have put together a survival kit: heat pads, hot water bottle, Tens Machine and a long soak in a hot bath.

Within a month of my diagnosis, I had visited my GP several times and was given different prescriptions over and over. I changed my diet, reduced my caffeine, dairy intake and cut out red meat entirely, hoping that all the online forums were right. In April, I decided enough was enough and it was probably time to think outside of the box. Acupuncture?

Acupuncture is:

  • “a system of complementary medicine in which fine needles are inserted in the skin at specific points along what are considered to be lines of energy (meridians), used in the treatment of various physical and mental conditions.”

I had my doubts. But, in desperation, I picked up the phone and stated my interest in having a session ASAP- to help with the pain. Within a few hours, I was contacted by the acupuncturist. A lovely man that seemed to understand my illness and empathise completely- which helped in itself as I was used to receiving a lot of blank faces when I disclosed my endometriosis. He seemed eager to help and sounded so sure that he could help; brimming with complete confidence in his craft. I was given an appointment the very next day.

I travelled the few miles to the therapy centre, my anxieties growing, starting to feel uneasy. The idea of having needles all over my body was not comforting. My worries grew and soon I had the image of Pinhead from Clive Barker’s ‘Hellraiser’ answering the door, beckoning me into the treatment room, to my torture. I have included a picture, just to show you how quickly my imagination escalated! Oh dear.

Pinhead

Pinhead

The therapy centre is off the beaten track in a village just outside of my town, I had never really seen the area very well or visited it much. It was a lovely, uncharacteristic spring day as we drove down a lane adjacent to fields with spring lambs bouncing through the grass. My spirits lifted even more when I saw the building. New and shiny, it stands in what appears to be the grounds of an old school. With the sun bouncing from the round window and a light breeze through the trees, I walked the paved path and spied an overgrown tennis court with weeds covering the court lines and growing through the net. It truly is a lovely place and if you have the chance to look around, please do. You can find the website here.

Anyway, enough of the location and my wild imagination. Next- bring on the actual experience! A short young man welcomed me into building. It is light and airy, full of windows and has a minimalist style. I started to feel better already. I turned to my husband to seek reassurance; we had suggested him waiting around or accompanying me but decided against it in the end what with the session possibly taking over an hour. I was a big girl and didn’t need him to hold my hand- much.

Once in the session, I told my story of confusion, worry and pain. I told the acupuncturist of all my hospital visits, my surgery, my medications. He asked about my diet and lifestyle. I explained that since all of this started I’d not really had much of a lifestyle. When he urged me to discuss my diet, I faltered. I was embarrassed. At that point, I pretty much survived on a diet of what I ‘fancied’. My appetite was poor, but I had to eat as I was taking medication so it was mainly things that I liked; junk food. As I reeled off my list of food stuffs, I became increasingly aware of how it sounded like a child’s menu without adult supervision; chicken nuggets, noodles, chips, chicken/tuna pasta, pie, smiley faces and broccoli. I’m pretty sure if Turkey Twizzlers were still in production, they’d have been on the list as well! He laughed and wasn’t too hard on me about it.

It came time for pins. Pinhead’s ugly, cruel features flashed in my mind instantly and then was forgotten as my acupuncturist talked me through the procedure. He is extremely well trained and qualified. He had learned in China, had a university degree, but most of all, it was his absolute assurance that it would be beneficial to me. And after months of medical professionals “trying this” and “giving this a go” – it was about time! He told me that he could feel how different parts of my body were poorly based on the different areas he could take my pulse. For example, on that day, through close monitoring of my pulse, he could tell that my lower abdomen and intestine were extremely enflamed. Woah. Even CT and Ultrasounds scans, X-rays and blood tests couldn’t tell that in my 5 hospital admissions.

Bring on the pins. The first few were a little cause for concern; going in my feet and toes! Ugh. This was hell for me, the idea of having a needle in my bony feet, is harrowing. I felt them go in, but as I wasn’t looking, it didn’t hurt, and they were quickly forgotten. I had a total of 7-9 needles in my legs, feet and wrists. He continued to check my pulse through the procedure and after the pins were in for 20 minutes confirmed that my pulse showed that the aggravated body parts and eased and settled down a little. He stated that I may need ‘top-up’ sessions (it looked like I would be seeing more of Pinhead) and that he would contact me to see how I was feeling.

On leaving the session and building, the sun was shining. I don’t know whether it was a psychological thing as I expected to feel better, whether the pins had actually eased my raw organs or whether my painkillers had kicked in, but I felt like running. I felt more upbeat, laughing as I retold my experience to my husband, including all the Pinhead bits! My body felt alive, tingly almost, I felt ready to run a marathon; that sensation when all your muscles tighten in expectation of adrenaline. Everything felt slower, I felt ready, better able to cope with the day. It was £40 well spent.

I was under the impression this would last a week. It didn’t. Within a few hours I started to feel very tired, my muscles ached and it was hard to keep my eyes open. I collapsed into bed for an early night. The next few days I had pain but it was more manageable. I was able live close to normal, doing things I would normally do; work, eat, walk. And just for that, I would recommend, wholeheartedly, the Acupuncture experience.

A xo

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

We are Here.

Since being diagnosed with Endometriosis I have been trying to get my head around the impact the illness has on my body, on my life and the people in my life.

During a particularly successful brainstorming session between my husband and I, it became apparent that because of the lack of knowledge and awareness surrounding Endometriosis, diagnosis proves difficult to obtain. Women struggle with chronic pain for years and years with no idea of the cause, insufficient pain management treatments and a deep sense of despair.

I am going to try and help. I have decided to use my experience and diagnosis of Endometriosis for something positive. I’m starting out small with the hope that it grows into something magnificent. And hopefully, this will prove to be quite therapeutic for me too!

INTRODUCING… 

Bassetlaw Endometriosis Awareness & Support Team

Bassetlaw Endometriosis Awareness & Support Team (B.E.A.S.T) has been set up to offer women and their families a place to come together for support, it’s a virtual shoulder to cry on, listening ear and an online hug. The internet makes it possible for us all to reach out in a way that hasn’t been possible before. One of the biggest difficulties with Endometriosis is that it is incredibly lonely sometimes, especially before diagnosis.

People in the Bassetlaw area can seek information, support and can find out about events that I plan to host as we raise awareness (Events like coffee mornings, charity walks etc).

I have put together brochures explaining the illness from the point of view of someone who actually suffers with it. We have our own logo. We even have a twitter page.

So if you know anyone that has Endometriosis, or even shows some of the symptoms – please refer them to this Team.
I have said team, as every woman/supporter involved is a member and has something to offer someone else; understanding, experience, support. Every woman’s experience of Endometriosis is different and we can all learn from that.

Email us: bassetlaw-endo@outlook.com
Please visit our Facebook page: http://www.facebook.com/BEAST.Bassetlaw
Follow us on Twitter: @BassetlawEndo 

A xo

https://www.youtube.com/watch?v=i41qWJ6QjPI

Endo-what?

“You don’t look sick!”

“It can’t be that bad surely,”

“It’s just woman problems.”

“Have you tried Paracetamol?”

“I know what you mean..”

Well in my world, if you’re not me, you can’t possibly know what I mean at all. For 6 months I have suffered with an agonising pain that appeared like clockwork every month. Tell me, do you know how hard it is to try to be optimistic when you know to expect the worst? As I said, probably not.

Opening your eyes in a morning with a pain so severe you can’t even sit up. You can’t even walk, having to crawl into the bathroom to throw up, having to lie there on the cold tiled floor whilst the bath fills slowly with scolding hot water. Having your abdomen covered, front and back, with heat-pads just to try and find some relief.
And worse, having to contact your employer and tell them you can’t go into work today as you’ve got really bad pains, “period pain”, trying to make them understand just how bad it is. Willing them to understand, thanking god when they do because you know there’s no way you could possibly make it into work without fainting and vomiting. Calling your boyfriend before he finishes work to make an emergency stop at the all night chemist for Tampax because you’ve almost used a full box in a day or so. Losing clots of blood the size of 50p coins, feeling so exhausted you think you might never move again. Asking your partner to carry you, put you to bed, rub your back, listen to you cry and scream in pain; then watching the hopeless, helpless look on his face as he tries to look after you the very best he can.

It’s funny really, I can’t actually explain to you what the pain feels like. When I try and think back to how it’s been the month before, it’s like I’ve blocked it out. All I can say is, when I think about having to go through that pain again this month, I feel a gut-wrenching fear that brings me to the edge of tears. I cannot do it again. And yet, it comes and I do and a month later I find myself back in the same situation.

Endometriosis. For those of you who aren’t aware of what it is (and there are a few, I was one!) It’s an illness where endometrial tissue is found outside of the womb. It causes excruciating pain, infertility, chronic fatigue, and in some cases; financial problems and relationship breakdown.
There is no cure. It’s average diagnosis time is 7 years; from first appearance of symptoms to diagnosis. That is not good. Understatement. Women are struggling all over the world, visiting their GP, being rushed to hospital, being admitted to hospital, trying to get help. To be in pain is the worst feeling in the world, worsened by the fact that you feel alone and unable to get help.

I have had 3 hospital admissions since August 2014 and several out of hours doctors appointments. I have struggled since February 2014 when my gynaecologist decided it was unlikely I had endometriosis and decided not to send me for the diagnostic laparoscopy. This man I met again on my 3rd hospital admission, he waltzed on to the ward and I felt an impending sense of despair. He had no idea who I was, or that he’d seen me before, he then told me he was sending for (another) scan and that the pain could be due to a water infection or I could be constipated or appendicitis – all that I’d heard before. The frustration I felt at the moment was strong enough that it could have lifted me off of the bed. He informed me after checking the scan that he would just help manage the pain as I was booked in for surgery in January 2015.

A week after I was discharged, 20th December, I married the love of my life. I only just made it down the aisle.

I mentally prepared myself for surgery, thinking positive despite several doctors telling me not to pin my hopes on the operation as they might not be able to find a cause of the pain. That in itself is a frightening thing. If they can’t find anything, I’ll just be left to deal with this every month by myself. Surely I wouldn’t have all this pain for no reason? But doctors assured me this could be possible; “some women just suffer more harshly than others with period pains.”

So I went under. I can’t tell you how long I was in surgery for, it felt like I’d only blinked. But the moment I opened my eyes, I was in agony. The nurse pumped me full of Morphine and Tramadol as I tried to listen to my consultant explain he had found severe endometriosis. That my ovaries had been fused to my pelvis. That if I wanted children, to have them sooner rather than later as my fertility would only decrease as I get older (but hey! there’s always IVF), and that an hysterectomy would be the final decision but was hopefully years and years away.
I can tell you, the relief that he’d found something, found an answer when I’d had none for months, I’ll admit I cried. And I have cried a lot since my surgery over 2 weeks ago. I’m still sore and I’m still learning what I can do to help myself and what options are.
But the first thing I realised, it’s not all hopeless. There are success stories. There are alot of women I have come to know that are surviving with endometriosis; brave, strong women. Most have been surviving a lot longer than I have, years they have endured such agony. All smiling on the outside, while suffering awful pain on the inside. I salute you ladies! You inspire me to look to the future with a positivity I didn’t have before Christmas, pre-op.

I debated whether or not to write this entry. Thinking it might be too much, it might not apply to everyone, maybe it does, maybe it doesn’t, but this is how endometriosis has affected me and my life. I hope whoever reads this has had a better time, or that this can help you understand and appreciate what I’ve been through.

My name is Aimée, I’m 24, married and I’m surviving with chronic endometriosis. There I said it.

xo

Deep breath! aaaand let’s smile. These have made me smile:

George Michael – Faith —    https://www.youtube.com/watch?v=29GWMT0GB6s
Olly Murs Ft Demi Lovato – Up —      https://www.youtube.com/watch?v=6Cs3Pvmmv0E
Jimmy Fallon’s lip sync battle with Will Ferrell & Kevin Hart —
Bruno Mars & Mark Ronson – Uptown Funk —   https://www.youtube.com/watch?v=OPf0YbXqDm0
Ed Sheeran – Thinking out Loud —     https://www.youtube.com/watch?v=lp-EO5I60KA