My Experience of Living with Chronic Conditions. Part Three.

When people see me, unless I am using my walking stick, they don’t see that I have disabilities. That’s because my conditions are, mostly, invisible.

A lot of what I do is about acceptance and accessibility so I thought the time had come to tell you about the conditions I live with.

And I thought I would do them as chronologically as possible. I’ll combine some of them, because that makes sense to me.

Although one of mental health conditions should probably come next chronologically, I have decided I am not ready to share that yet, so I will tell you about others first.

In two previous blogs, I have told you about my EB and my bursitis; you can read those here

I also have endometriosis.

It wasn’t diagnosed until around eight years ago but I believe I have had it since puberty; without giving my age away, that was over 20 years before I got diagnosed. That’s actually not that uncommon.

This is what the NHS website says about endometriosis:

Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes.

Endometriosis can affect women of any age.

It’s a long-term condition that can have a significant impact on your life, but there are treatments that can help.

Symptoms of endometriosis

The symptoms of endometriosis can vary. 

The main symptoms of endometriosis are:

  • pain in your lower tummy or back (pelvic pain) – usually worse during your period
  • period pain that stops you doing your normal activities
  • difficulty getting pregnant

You may also have heavy periods. You might use lots of pads or tampons, or you may bleed through your clothes.For some women, endometriosis can have a big impact on their life and may sometimes lead to feelings of depression.

Thanks NHS.

And periods are usually so much fun, otherwise! 

For me, thankfully, as with my EB, I have a “mild” form. This means that I am usually not affected most days, “just” for around ten days a month, with two to three hideous days.

On my bad days, I am exhausted. I don’t mean I’m tired and could do with a nap; I mean EXHAUSTED; I mean that it feels like I am wading through setting concrete; I mean that a fork feels too heavy to lift to my mouth; I mean that the thought of standing and making lunch feels like climbing Kilimanjaro; I mean that having to concentrate so hard to be able to have a conversation with someone that, after, no matter how happy the conversation is, I just want to cry.

So, on saying all this, you would think sleeping would be easy, eh? I wish!! I’m in so much pain that it’s difficult to settle. Then, because I am bleeding so heavily, I have to get up three or four times a night. Which adds to the exhaustion.

And the pain!!! With the conditions I live with, I am in pain every single minute of every single day. But, when it’s “that time”, every single bit of pain intensifies and there’s new pain on top!! 

The bursitis pain I talked about in one of my previous blogs, with the thumping and stabbing sensation, now also has a tearing sensation; it feels like every piece of muscle and tendon in my hips is tearing, desperate to get away from whatever it is attached to.

Other conditions that I haven’t talked about yet are also exacerbated; my degenerative spinal disease, which normally means fairly constant backache, feels like I am being kicked continuously.

My thoracic outlet syndrome, that makes my hands and arms painful to use, are even more painful because of the aforementioned wading through concrete feeling.

And, then, we have the “usual” period pains; for me, it feels like I have a lead rugby ball in my lower abdomen that some burly player kicks every now and then for fun.

I try so hard to get comfortable but each position only remains comfortable for a matter of minutes. Sometimes, you’ll find me balanced precariously on the edge of the sofa, bent double; other times, I will be hanging over the edge of the arm of the sofa; occasionally, it feels better to have my knees tucked up close to my chest; other times I need to stretch and take up as much space as possible. 

And I am one of the women where it has affected my fertility. Or lack thereof. I got pregnant once, when I was 22; I miscarried at 13 weeks and I haven’t been able to get pregnant since. The emotions and the work surrounding coming to terms with that is a whole other blog.

So, even for me, a “mild” case, endometriosis is not “just” a bad period. It’s painful, emotional, and exhausting.

As I said at the beginning, a lot of what I do is about accessibility and acceptance. I hope this blog gives you a small insight into what it’s like to live with just one of the many, many conditions there are, and how that, for those of us with invisible chronic conditions, you can’t see what’s going on behind our smiles.

Always remember to be kind. Always remember to be accepting. Always remember to be inclusive.

Leave a Reply