Behind the Scenes: Trial and Error Beyond the Doctor’s Office

Behind the scenes medication trial and error, taking care into your own hands graphic

Our journey’s with finding what works for us can look a lot of different ways, but for some people the constant fight between specialists who never look at the whole picture, medication that causes additional problems, and neglect becomes too much. It’s apparent that we aren’t getting any better with the help of the medical system and our gut is telling us it’s time to forge a path for ourselves, trusting that we know what is best for our body.

Kim’s journey away from medical management is one that has taught me so much and reminds me that we often have a strong ability to discern what is and isn’t working, and if physicians aren’t letting us guide our own care, we have every right to take the lifelong trial and error into our own hands. Sure, this may not work for everyone, but I think it’s a critical part of this Behind the Scenes Series and exploring another perspective that many doctor’s don’t know about since the lived experience is happening far removed from their exposure.

Kim’s story begins with a train ride to Edinberg, where a sudden jolt as she was getting her luggage down would change her life forever. Kim was headed home to begin her life as a fulltime artist, preparing to create her portfolio. The train’s jolt sent a twinge down her spine, and the next morning she would find her back seized up and her toes numb. Two sleepless weeks would pass, the emergency room passing her off after x-rays came up showing no signs of broken bones.

Throughout this time she followed advice of a physio who encouraged her to continue to be active, which was worsening her back injury, rendering her almost immobile. It would be almost three years before an MRI would show that three of her discs had substantial damage. The resulting pain prescriptions that would give her a bit more freedom to move around began taking a toll on her stomach and Kim soon found herself intolerant to most of the meds she was receiving.

I want you to hear much of Kim’s story through her eyes, so I will let her tell it in her words beginning after her back injury, at a time she describes as the lowest point in her chronic illness journey:


I had lost all momentum, confidence and what tethered me to the world. I was a very busy and secure person before, I always pushed hard and fought to make my life what I wanted. For example before my stomach issues began I was embarking upon an embryonic art career. I had 6 exhibitions that year that I helped to organize with a group I was running as well as creating art for. In tandem with this I took a year to complete make up artistry qualifications so my partner who is a photographer so together we could run a photography studio. I also tried to teach dance on week nights, too as I missed my old dance group but with the state of my back it was impossible and I had to stop teaching almost as soon as I had started. 

At the end of this academic year I was hoping to have a long break with lots of sleep but life had other plans. Out of the people who raised me, one had died suddenly and the other was in a nursing home with dementia leaving me alone, the sole repository of our history together and the bearer of fresh grief that I was ill equipped to process.  I have issues with my back and constant pain all throughout this but I just keep pushing to continue as I have no option. Just as my newly minted stomach issues begin to flare up and I was wondering if I could continue on a normal life we got the chance to move to the countryside and increase savings so we do. 

My symptoms included heartburn, coughing from the acid in my stomach, frequent indigestion, the most extreme stomach pain and cramping I have ever experienced, my breasts ached, my joints swelled and burned, I had muscle spasms and leg cramps. I had nausea, dizziness and vomiting often, just the action of standing up trigged me to begin retching often unproductively over the toilet I was so nauseous. My brain was foggy (I used evernote on my phone as a memory device), I would tail off mid-sentence, forgetting words. I was exhausted and irritable with a short temper. I wasn’t great at sleeping, my heart raced and I woke up with night sweats for the small amount of sleep I was getting. I even had a skin rash that wouldn’t leave as well as mouth ulcers. I also had heart palpitations, I believe from the dehydration at this time and they were scary.

Many foods were no longer tolerated by my system either anything with garlic, onion or tomato, fruit especially citrus, uncooked vegetables, salads, currys, meats are out. Only the blandest of foods are edible. Eventually the only things I can eat without throwing up are dairy and sugar so I have been living on yogurt, cheese, ice cream, milky drinks and strangely enough…coca cola. Because it has enough sugar in it to stop me from fainting I suppose. Looking back any quick sugar would have helped, gummies, jellies, etc… something that I could use for a fast energy burst that would dissolve in my stomach and not have to pass through my inflamed insides.

My stomach is so painfully tight and bloated that I look pregnant. I have to buy new clothes to fit. I have gained three and a half stone through my new odd diet. I had the reverse of most people, I had weight gain instead of loss and I believe this is what truly masked what I had to my regular GP who really only had 10 minutes to give to each patient. I was putting on weight, so I should have been ok, right?

There was an accompanying worsening of my anaemia, which I already had. The Iron tablets I used to fend it off were no longer tolerable, neither were the medications for my back pain, I just had to do without. No alternatives were offered to me.

I was 2 years into showing symptoms with it at this point and had little patience. Despite being given the following diagnosis first h pylori, gastritis, then ulcerative colitis and duodenitis, an upper Gi endoscopy that discovered a hiatal hernia, I entertained frequent bouts of cholecystitis that were first assumed to be gallstones but an ekg didn’t show any up, eventually I was left unable to eat at all and vomiting up water. My pain was so great I just sat breathing shallowly through gallbladder attacks as I was too weak to seek treatment in hospital. Significantly the first time I did seek treatment for this I was sent home with nothing after an entire day waiting in the emergency room to be seen with pain from my gallbladder and a line in my arm waiting for fluids. Obviously the person crying that they didn’t want pain meds or any meds at all, that they just in fact wanted to be normal again was engaged in drug-seeking behavior. *sarcasm*

I ran the gamut of meds for stomach issues, since I wasn’t able to tolerate pain meds everything just hurt all the time. I had very severe intestinal cramping for which I was never prescribed anything. That was just a fact of my life, I was constantly hurting and exhausted from the pain. I was given Nexium first, which really seemed to help with calming things down but soon got swopped out for a generic “Ozole”  and these got swopped around frequently which wasn’t so good and had some bad side effects for me. Motilium was no longer over the counter at this point in my country and I was given it to help with nausea but I don’t think it really worked and is not good for anyone with a heart complaint or on antibiotics. I was changed to Stemetil for nausea, vomiting and dizziness which actually worked. It meant I had some more mobility in the day as I wasn’t needing to run to the bathroom to vomit in between bouts of dizziness-but came with a side order of everything having a green aura that I gladly accepted as it gave me back some normality otherwise.

I was given antibiotic therapy to help my gut for a while, which might have helped but the subsequent diarrhoea and constipation cycle it provoked erased all the good it provided me with (weirdly my back got almost better with this, but it equally could have been the bedrest)  I constantly downed probiotics and tried to eat on these antibiotics as best as I could but my diet was mostly liquids now, I was able to eat a light dinner every third day. I couldn’t even take a bowl of cereal or a banana with my antibiotics, that would send me into a flare. Everything was sending me into a flare that wasn’t a liquid really. I would not go to the bathroom for 3 days then I could go fifteen times in one day.

The last gi specialist I was sent to decided I either had either the catch all IBS or a somatization disorder.  He didn’t know.  He didn‘t even talk to me about my symptoms in person. He sent in an apprentice who only focused on the bowel end of my problems and wrote only those down for him. He came into the room and read what she wrote which must have been half a foolscap page despite my desperately trying to be understood for maybe half an hour and even thanking her for listening to me. Having your explanations misinterpreted is very common amongst people with chronic illnesses.

I had by this time received a gamut of oftentimes contradicting diagnosis from what I believe should be a simple thing to diagnose – gluten intolerance. I have since discovered that I am coeliac (referred to as celiac in the states), but the median diagnosis of this chronic condition can be 7 years. That appointment with the GI specialist made me so mad I decided to part ways with traditional medicine and advocate and care for my own health.  All I had to show for the previous 5 years of medical care was a loss of my normal healthy life, my career and my friends. My world had shrunk down to encompass only my toilet and bed.

I was totally at odds with my life and my body I hated in particular as I felt like it had let me down. Instead of feeling my usual passion and wonder at what a gift life is – it became a series of chores from getting out of bed in the morning until the moment I could end my day and sneak back there again, because being upright and alert is difficult when you have the additional burden of constant pain. I decide to wean myself off all meds or as much as I can manage after I go for a trip into town with my friend who wants to browse in clothes shops. I fall asleep in the car on the way home and it takes me 4 days after to recover.  At this point my life is entirely on hold, we moved to our new home 18 months ago and I can barely be away from the bathroom most days. I tell myself that I am improving because I was able to make a trip into town with my friend anyway. I tell myself I can handle this and that I am fine but I feel like I am being constantly knocked back.

I hadn’t even bothered looking up my symptoms before. I just blithely described them to whatever doctor or specialist I found myself in front of, who no doubt only caught the parts that were relevant to what they were looking for in particular. I can say I probably had so many separate issues at this point that I didn’t seem to have any one thing and it would have taken some very complex sleuthing to narrow it down. I am disappointed that nobody I had engaged with as a patient tried to.

I set about being my own champion.

First thing I research is my birth control. At the time it is the Nuvaring can mimic food allergy like symptoms and I am on it 4 years by now. I actually feel ready and want to have a child or two at this point in my story but I know my body won’t be able to handle it. My mother and my partner are worried it might kill me off if I became pregnant so I decide to get an iud.

As I am anaemic I decide the Mirena is my best bet as with the light hormones some women don’t get periods with it at all. Unfortunately my gp doesn’t tell me that hairloss is a factor. I lose half of my long hair and I cry so hard, given that I have hung onto it this far and it’s at this point the only part of my prior personhood I see when I look in the mirror. Its falls out when I am so close to feeling better that it feels like a setback.  As the device settles down in my body, I have no periods at all, and it’s been like a dream in for almost 4 years if you can stand the hairloss. I am quite even emotions wise with this IUD and it’s something other women on it report. I can say it only helped me in this way.

I am depleted in most vitamins and minerals. I am not able to stomach a lot of vitamins yet, Perfectil (a skin, hair and nail supplement I had always used) and iron tablets are still out (years later and I am still having trouble even with liquid iron supplements and I mostly eat organ meats like liver several times a week to get my dose of heme iron instead) I take vitamin B and D, I take magnesium. It increases my energy levels and helps my brain fog. I could feel my exhaustion ebbing away and I became better able to grab snatches of sleep at night.

I try other supplements. I take turmeric tea, and a tincture as it is supposed to be terrific for inflammation, not knowing it causes iron malabsorbtion and develop neuropathy in my hands that takes a few years to get rid of as my body can’t tolerate iron supplements anymore to bring it back up.

I try to keep to as bland and plain a diet as I can manage, not knowing I am still hurting myself with gluten containing foods. I go caffeine and sugar free where before the slight energy rush from these things were the only things keeping me standing. I have only recently been able to drink coffee again, I have missed it very much, I drink one in the morning and it is a privilege I do not take for granted!

Finding Out I Am Coeliac

My partner is away and I have a week long intensive course to keep me busy and out of the house. I spend a week eating foods I can prepare quickly as it’s just me- the old student standbys of sandwiches and pasta. All of my old symptoms flare up and it suddenly clicks in my head. It’s my immune system. I am sensitive to gluten. I am coeliac. I have been all this time.

My life demonstrates a marked improvement from now on, as I once again go on an elimination diet. Later on again, I cut out all grains not just gluten containing ones (Oddly enough most coeliacs are intolerant of oats which is unlucky as most of the gluten free cakes, biscuits and bars are based on it) and this is where I feel I felt true health return to me.  I eat mostly plant based and batch cook foods like soups and meats with vegetables a couple of times a week to eat fresh. There are no flares, there are no twinges, and there is just peace in my insides and plenty of restorative sleep.

I go on walks in a local forest about once a week, they are short, half an hour usually and knock me out for days afterwards but I persist. Currently if I feel like a 3 hour hike in the forest I can do so and still have energy left for other things.

While my gut is healing from all the compounded damage that gluten has done to it, the arthritis in my hands that had been steadily worsening all this time, usually itchy, stiff and painful clears up. Before if I wanted to take out my sketching things I would lather up with difene gel wondering if even that little bit of topical difene might be bad for my system and now I can get by without using anything at all as my joints no longer usually ache.

Basically I began shaping how I would like my days to look that would give me the best balance and quality of life all around. I know some doctors believe that people living with chronic illness and disabilities can never have a comparable quality of life to a healthy person but I have not found that to be true. Oftentimes we know better about pacing, flexibility and accepting our limitations than anyone. I believe I have created a better and more sustainable life for myself and my loved ones filled with meaning and the things that matter the most.

The only thing we can truly count on is the fact that we will not know how our energy levels and health are going to be one moment  to the next  so with that uncertainty in mind I began living in a way that made me be the happiest me that I could be.

As my life was mainly bed I began making this environment as comfortable as possible for me; a mattress topper, new pillows of varying, v shaped cushions, pretty bedclothes that made me smile, a salt lamp, twinkly lights, my favourite ornaments, a stack of drawers that I kept my journals in. A little zippy bag with lip balm, hairbrush, baby wipes, hand sanitiser, my supplements and the few over the counter treatments I was taking at the time, a lap tray for hobby things, another for the laptop.

I journalled everyday as I had always done, being an observer of my thoughts instead of being led by them, if my thoughts were the weather then my personal self was the land and the sky. I tried to let my worries and unhappiness flow from me and not get bogged down by them. One borrowed practice I felt that helped was to write down 5 things I was grateful for everyday and I still do that. I read as an escape, you can go anywhere in a book and live many lives. In a large cold house I kept an electric blanket over me for personal heat control. I had hot and cold pads for pain. My little dog for company. 

I prioritised activities and saved my energy for the things that I know mattered to me, such as time spent in nature, If I feel like I need a stick to help me walk on uneven ground that day I use one. I delegate what I can. I put the minimum effort in to things that don’t really matter to me like life admin. I batch cook twice a week so there is healthy food that need only be heated up always there, I do one big clothes wash a week, all my bills are automatically taken from my bank account, there is one big shop done every other week. I have other household chores spaced out over the course of a week so I am not overwhelmed by them.

I pushed myself beyond what I was able for the things that mattered. After not going anywhere for the previous 2 and a half years I made a booking at a small music festival in the woods that had ample couches to sit on, with my hotel literally across the road. I wasn’t sure I would be able for both days and I absolutely surprised myself. I reconnected with my younger brother there who I had not seen in a long time and I loved it although I was wiped out for a week afterwards. It was so worth it.

Chronic illness robbed me of a lot of my previous ways of interacting with my hobbies so I had to find new pathways. Making sure I had high v’s low energy hobbies was instrumental in keeping my mind and hands busy and absorbed in the present moment. I remember reading a well worded quote that you should always have a few hobbies but its origin eludes me now.

I liked reading, art and fashion and there are both low and high energy ways of engaging in them.  Fashion as a hobby is pretty low energy, I buy and wear the clothes making some allowances; nothing tight around my midsection. Art for instance I loved to paint before, it was my passion. But my real love was for art itself. I was given a colouring book for Christmas with beautiful art that I was able to engage with. Imagine my shock when I coloured something for the first time, uploaded it to instagram having tagged the illustrator and received a lovely comment under the image from them. I began to see it as a collaboration as indeed do a lot of people involved in the hobby. It’s exciting to see what people can do with an image! I even learned techniques off other colourists.

My days look almost normal now although I am still uncovering pieces of my health puzzle, and much more confident in my own intuition. For instance several months ago I noticed my left leg was markedly more fluid filled than the right and the front of my calf was one big bruise I couldn’t remember getting. Instead of going to what I assume is still my gp at this point (median diagnosis for lipoedema again takes a long time, also the single medical intervention they can provide is liposuction)  I make an appointment at a lymph clinic and on presentation was told the therapist didn’t even need to see my bare legs to know that I had lipoedema. I was informally diagnosed with stage 2 lipo-lymphedema.

I began a course of manual lymphatic drainage treatment at the clinic immediately and ordered several pairs of compression stockings which the therapist helped me chose, to wear from the moment I get out of bed in the morning until I go to sleep at night. I exercise gently twice a day making sure one of these is a walk. I went on an anti-inflammatory diet to help and lost 24lbs in a short space of time. I have lost 55lbs overall with weight management, losing  more than the 49lbs I had gained with my coeliac odyssey. I was told if I got an insect bite to present at my gp for antibiotics because I am allergic and with this condition an allergic reaction to a bite makes me very susceptible to septicaemia.

A bit of the trial and error in this is that as I rapidly lost inches off my leg circumference the excess fluid seemed to collect in my lungs causing a lot of coughing, dizziness and exercise intolerance which was scary but it tapered off. I have legs now that are much less heavy, less painful, less bruised. If I had hadn’t tended to my lipo-lymphedema my legs would have been disimproving all this time while I waited on treatment. In my country the standard HSE care amounts to a very inadequate 2 pairs of compression a year and 2 sessions of manual lymph drainage. Most sufferers pay for their MLD treatments and wrappings out of pocket. When covid times have passed I will turn up at my GP’s surgery with supporting documentation of my treatment from the lymph clinic and the name of a specialist to be referred to, to seek formal diagnosis for.

It has since been really helpful to see people helping each other with symptom management and being instrumental in the untanglement of their chronic illnesses. I really wish the internet in current form had been around then and I had a friendly #neisvoid to pop over to with my symptoms as they cropped up. If you are at the start of your chronic illness journey reading this what I would like you to know is that you shouldn’t listen to anyone who dismisses you. Keep pushing for a diagnosis; don’t let yourself be fobbed off. It’s not the worst thing in the world anymore to rock up to an appointment with a printout of something, circle the symptoms you are having and say I feel I may have this thing because I am experiencing 8 out of 11 of the listed symptoms.

Over the years I have untangled the following separate issues, some are diagnosed like my anaemia and my congenital heart defect which has never given me any trouble but which doctors love attributing symptoms to. I am also coeliac, I have OA in my spine from some slipped discs and a lot of reinjury according to my MRI’s, RA that’s never been treated as we were focusing on my other issues at the time but has been plaguing me since I worked outside in all conditions as an archaeologist. More recently I was discovered to have lipo-lymphedema. POTS was the last piece of the puzzle and I felt so much better keeping up my fluids and salt and wearing lower body compression stockings; this is a bonus help as the compression was purchased as an aid for my lipo-lymphedema but it also helps me to be cognitively functional in the afternoon as my blood isn’t pooling in my lower limbs anymore.

Kim.


For now, the Behind the Scenes Medication Trial and Error series will be coming to a pause, but will likely be continued with various featured stories in the coming year.

I hope that in exploring this series you’ve perhaps seen some of yourself, felt seen in an experience that we often go through all alone, and understand how everything from multiple chronic conditions, conditions that lack research, insurance requirements, medical neglect, side effects from medication, and personal choice can all play a role in the lifelong fight to finding what works for us. Our care plan may be found through a doctor, it may be found through a more natural doctor, through our own personal journey to discovery, or a combination of them all.

The truth is, that no matter what, the impact on our lives deserves to be seen. The ways our quality of life ebbs and flows deserves to be understood and recognized as something important as it relates to the care we receive.

And I hope this series has helped shine a little more light onto that reality.

If you have a story you’d like to share, reach out to me via instagram (@mylifemymigraine) or twitter (@hemingwaymuse) and you could be the next voice for the future continuation of this series.

A.

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