On the psychology of the affected

Last week, five women died from endometriosis. Two of them took their own lives and three passed on due to complications. Though the sadness remains, this outcome due to endometriosis no longer comes as a shock and I find myself thinking about the aspect of the disease that is often overlooked; The psychology or mental state of a sufferer. 

Conversations about endometriosis seem to wind down in one of two ways; 

(After discussing your condition and your current state) 

-If you mention that you are working or are not in constant pain the next statement is inevitably... 

"So you're fine now"

or 

-If you mention that you are still in constant pain 

"why don't they do something about it?" or the worst "you need to get used to it then, distract yourself then you'll forget it"

Now while distraction can work for some issues, there is some pain, the kind that wakes you up from dreams, that you just don't get used to.

What is difficult for the non-affected to understand is that even when you are coping with the pain or (for some women) apparently symptom free, a new reality has taken hold. You are now haunted by the possibility of some anomalous growth inside your body creeping around and spreading, attaching itself to yet more parts of you.

This is the psychology of a sufferer. To worry. To think of a new worst case scenario and try to prepare for it, because your worst has already happened. That eventuality you couldn't have prepared for. That condition you had never heard of and might never have learnt to pronounce is now in your everyday vocabulary. You have a disease, there is no cure. So of course, despite your best efforts to the contrary, you find yourself preparing for a new 'worst' because that too is now a possibility.

This thought process I have come to accept is as much a symptom of the condition as the pain and needs to be managed where possible in the same way. I don't necessarily mean medication, but rather that a concentrated effort be made towards it. We need steps to be taken to care for the mental health of sufferers because it is equally important and could limit the number of women who think they cannot cope and take their own lives.

Do you have any thoughts on how this could be achieved? 

If you feel like you need to talk to someone;

0808 808 2227 - Endometriosis UK helpline

www.healthunlocked.com/endometriosis-uk

They also have support groups, follow this link to find one close to you;

http://endometriosis-uk.org/support-groups

On Having Bad Days

This was meant to be a different post. I was going to apologise for not updating this blog more often and let you know this was because I had started working again... I was going to write about the fact that I more or less had my pain under control. I was managing it successfully and was finally back on track, some new equipment had arrived for the office and I was excited!! All my siblings were around and we were headed to see the new X Men movie - this doesn't happen often enough, so my excitement was justified.

I decided to plan out this very uplifting and borderline over excited post, while waiting for everyone to get ready. I got up to get a drink of water and the little twinge I had felt all afternoon suddenly sharpened, my pelvis twisted- it's the only way I can explain it and the pain made my knees wobble, I convinced myself that it would go away, took my prescribed pain medication and went to sit quietly in a corner. 

Five minutes before we left I knew it was a bad idea, the pain tightened and my back hunched over into a standing foetal position, as though my body was trying to retreat into itself. My sister took my bag as I hobbled to the cab, the whole journey there, I clutched the seat and held myself as still as possible. It didn't help and while my family ordered food- literally enough to feed a small town, I ordered a bottle of water which I proceeded to sip intermittently throughout the movie - I still needed to take two bathroom breaks because the pain from trying to wait till the end of the movie was impossible to bear.

It occurs to me as I write this that in trying to present endometriosis as 'bearable' for lack of a better word, I might have inadvertently trivialised the pain it causes. Yoga, exercise etc, all pain management techniques I have mentioned definitely help me 'manage' manage being the operative word- they do not make me better and I sometimes forget this. I have some relatively pain free days and I risk it, I relax and let all my 'management' habits slip out the window, just to have a few days when I don't actively think about endometriosis and its complications. The days after these are often the worst.

So here I am nearly a week later still coming to terms with the fact that this body of mine needs work, that the best days are the days when I work to make it stronger, both physically and mentally, the days when I don't take it for granted, maybe the days when I don't pretend. Acceptance can be a beautiful thing.  

On Working with Endometriosis

Those of us that deal with chronic pain can find it extremely difficult to maintain long-term employment, especially with endometriosis, which can be very complicated to explain and almost always leads to being labelled the girl with 'those stomach issues who always takes time off work'/ I have tried to come up with some options and information that might help when trying to work and manage pain.

- Know your levels of pain

It takes a while to work out what you can work through and when you're on your way to full blown downtime. I've found that it's helpful to keep a pain diary or just make notes of pain patterns. This has helped me work out when my pain is likely to be worse so that I can prepare for it as much as possible.

- Prepare for flare-ups

I take a blanket with me everywhere, there's one in my car and I have one at my desk along with a hot water bottle and painkillers. There's nothing worse that having pain hit you with nothing to comfort you nearby.

P.S I also keep an oversized shirt nearby in case my pelvis/stomach area becomes inflamed so that I can undo the zip/buttons on my bottoms without worrying about being indecent.

- Look for the right type of work where possible

I'm sure you know this already, but it's worth re-iterating that part time work and temp work are very different.

Part time can mean fewer days a week or five non full days a week. The advantage of this is that if you know when your pain tends to be worse, you might be able to get hours that work around this. E.g. if you know your pain is worse in the mornings, then you can take on hours in the evening when you'll be feeling better.

Employers also tend to be a little bit more forgiving with part-time workers, especially those on a permanent contract than they are with temporary workers. Temp workers are usually there to replace other workers for a period of time, think of them as interim dams put in place to ensure the workplace is not affected by the permanent staff members absence. As a result of this they are very strict with their hours and have little patience for temporary staff members having to take time off work.

Another option is working from home, if you have a job that allows you to do that. That however is another post altogether.

I hope this helps.

Chi

Update: If you can, always have enough cash for a cab to get you home on your person - I have had to leave my car and get a cab home before!

Exercise Apps

Clockwise: My Pain Diary | Couch to 5k | Zombies, Run | The Walk

My Pain Diary – I don’t actually use this app, simply because I just make notes on my calendar for days when I am pain. But all the reviews I’ve seen suggest that this is a very useful app for making notes. If you use it let me know what you think.

Couch to 5k – Though this is meant to take you from zero exercise to doing a 5k. I think this is more suited to people who don’t deal with chronic pain as you have to follow the plan quite rigorously to get up to speed. Its still worth doing but you should probably allocate more than the stated 9 weeks for the program.

Zombies, Run- I love this app, it gives you really fun tasks to complete and the story pulls you in – well it pulled me in, enough to get me into my trainers and make me leave my house.

And Finally,

The Walk- This is great for getting your fitness level up. It gives you little targets and tasks, which make the long-term goals more attainable. You can complete tasks at your own pace and follow the story while you do.

What apps do you use when you need some motivation to exercise?

Endo Complications; Bowels

There are numerous symptoms and side effects –aside from pain associated with endometriosis and they can individually or all at the same time cause extreme discomfort and pain.

One of those side effects is bowel complications.

Though endometriosis is predominantly concentrated in the pelvis, it can also spread to other areas around the body from the bladder to the brain – though this is very rare. The most common areas it spreads to that cause the most complications include the bowels.

When endo occurs on or around the bowels, it generally happens in two ways. It either appears on the outside of the bowel and attaches it to a different organ or the pelvic wall, which alters the natural shape and movement of the bowels or it constricts the bowel itself so that the space becomes too small for waste to pass through comfortably. It also causes complications by infiltrating the bowel, thereby creating problems inside the bowel passage. These issues can go from being uncomfortable to downright painful so having suffered from some of these complications, I have written out my coping methods below.

Water

Along with regular exercise, I think this has been the most important factor in regulating and removing pain from bowel movements. I drink at least 2lts of water a day, along with numerous cups of tea. I have found that it has helped to soften stool and make the process a lot less painful, if you have bowel problems then you probably get those involuntary cramps in your stomach and pelvis when you go to use the bathroom. Water has greatly helped e with these cramps as I now don’t get them as often and they are a lot less painful when I do.

Fibre

I’m sure anyone with any kind of bowel problems has heard that fiber is the great cure for constipation or blockages. What they often forget to mention is that eating too much fiber can cause exactly the same problems and exacerbate a pre-existing condition, especially if you have a sedentary lifestyle, like a lot of endo sufferers do due to pain. Fibre is obviously a necessary part of regular bowel movements and helps to reduce pain associated with constipation due to endo in/on the bowel however this is only if it is taken with a lot of water which it can then absorb to make it easier to pass through the bowel with other foods.

Exercise

Though this might be the toughest part in trying to manage bowel complications. I find that it really helps with regular movements, which will help reduce long-term pain. Even a walk a day, anything from 10 minutes to an hour makes a difference as long as you work your lower half as it helps to physically move the waste through your system instead of relying only on peristalsis. This also helps to strengthen your internal muscles, which helps when passing food.

.        Exercises for your bottom half – squats, lunges, yoga, walking, jogging.

Aloe vera and Green Tea

This is a personal favorite of mine. My mother suggested this for months on end literally when I started complaining about the constant pain I had due to my difficulties using the bathroom but the taste, goodness the taste! I couldn’t face it because the experimental sip I had had in the past made me gag and worked facial muscles I had never felt before.  I find that it helps settle my stomach and subsequently the pain in my pelvis. I have read up on it a little and apparently the polyphenols in green tea and aloe vera help to reduce inflammation- one of the main causes of endo related pain, this in turn I presume reduces inflammation around the bowels and makes it easier for waste to pass through.

This can be a little difficult to fins, so click here to see a link I found on amazon

Hang in there

When you have endometriosis, it's amazing how quickly your body can turn on you. How quickly you can go from having a great morning to a pain filled afternoon.  I’ve found that on those days it’s better to take a second, an hour, whatever you need and let it be. Getting frustrated somehow just seems to aggravate the pain, so if you’ve had or are having a tough time – especially after all the Easter celebrations. Take a breath, you’ve probably earned it.

The 5 (or 6) stages of Endometriosis

Receiving a diagnosis for endometriosis will generally cause a flurry of emotions, running the gambit from mild confusion to eerie calm or mild hysteria.

I had spent the majority of my life as an athlete, eating healthily and staying fit were priorities for me and in one afternoon, I was informed that it hadn’t mattered at all. The body I had worked to keep fit had let me down and was falling apart and I came to know it intimately.

It was only after I abstractedly reached the end of the process that I realized that my process for coming to terms with the situation had closely mirrored the stages of grief.

Disappointment

While this is not generally part of the recognized stages of grief, it was a distinct and momentarily crushing part of my process. I had researched endometriosis amongst other possibilities for my symptoms and while cancer is infinitely scarier and more serious, the confirmation of endometriosis after finding a cyst was the most likely and as a result the most dreaded.

Denial

Despite hours of research and despite the fact that endometriosis was by all accounts the least life threatening- in an end your life kind of way, not make your life miserable kind of way. I still couldn’t process it. I decided that while I had endometriosis, it couldn’t be that bad. They would go in, drain the cyst, cut out the endo tissue and I would be done. Finished. Healed. Back to normal… Lets just say I spent a while on this part.

Anger/Fear

There is no cure. There is no cure? There is no cure! Seriously? Seriously! What do they mean there is no cure? Of course there is no cure they don’t care. I mean seriously? There’s no cure? And so it went, over and over and round and round. In truth I knew the anger masked the fear slithering through me. Would I be a weaker person now that I had a condition? I worked in a fast paced industry and even if I didn’t, being in pain and on constant medication was incomprehensible.

Bargaining

I didn’t bargain.

I don’t know why.

Maybe I was too busy being angry and afraid.

Depression

It felt like punishment. Rationality and logic lived on another planet and the feeling of helplessness was insidious and for a few weeks I wallowed. This particular stage hit me at different times, right at the beginning, when I was in denial and even after acceptance. It comes and goes albeit to a much lesser extent and I have learnt to treat it as good days and bad days. On bad days I try a little harder.

Acceptance

And here I am. Acceptance. Accepting… with the nuanced and evolving – if untreated, nature of endometriosis. I’m sure I’ll be dealing with this stage for at least the rest of my pre-menopausal life.

Bringing me to the first stage of the pain toolkit by Pete Moore, which gives an action plan for living with chronic pain. I will post about this next week, if you would like to check it out in the meantime click here.

What process did you use or are you currently using to accept that you have endometriosis?

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