30 day chronic illness challenge

Day 8 - Where do I see myself in 5 years time?

In 5 years time I hope to have a young family. My husband and I are currently trying, against some odds, so fingers crossed our hopes will be answered.
I hope to still have my transplanted kidney and for it to still be stable. It will be 10 years old then.
I hope to have fully embraced and accepted my conditions. They make me who I am. Without them I would be a totally different person.
I hope to be happy and for the anxiety and depression to just be a vague memory that almost feels like it happened to someone else another lifetime ago.
But if other things do crop up or don't go exactly as I envisioned then I hope I can take on these new challenges with bravery and strength.

Day 11: Why do you believe you have this illness? Bad luck, a higher power or something else?

Okay, my answer for this isn't going to be inspiring or the least bit interesting: mostly luck. Faulty genetics. I personally don't believe in a higher power or things happening for a reason. That doesn't mean I don't believe in finding meaning in something that happened. And I'm still working on finding meaning in having these illnesses.

I'm also aware that I probably could've taken better care of my body before my conditions got worse. I'm not blaming myself for not knowing any better, but I could've done better. Still, there's always something I could be doing better, so I'm going to try to appreciate myself for doing the best I can.

Day 10!!!

There's a lot of things that make my life easier... Everything that could lift my spirit, it could be a song or a movie, or just looking at pretty colors, a cool design, a nice chat with the disability support group (you guys are AWESOME!!!). MEDS!!! In general a bunch of simple things.

Day 1

I'm Karen. I live with Joint Hypermobility Syndrome and IBS and reflux which are probably related to the same collagen disorder. JHS causes chronic pain and chronic fatigue. These are probably the underlying causes of the depression and anxiety I manage daily. I'm lucky not to have the degenerative form of JHS.

I also have a 30% hearing loss, mainly in the high tones and chronic tinnitus. I'm loving 7 cups, because my hearing loss is no disability here.

I live in England with my wonderful partner and amazing daughter.

I'm looking forward to getting to know you all.

Day 6

In terms of my hand eczema, i probably shouldn't have just shrugged it off as dry skin and actualy told myself I should look into it, because it ended up getting worse and worse until I was embarrassed to let anyone see my hands at school. That's how bad it became.

Day 9 - have I ever tried any alternative therapies?

When I was young my Mum really believed in trying anything to help my conditions. There was a woman up the road, Kathy, who would perform reflexology on me regularly. Kathy also raved about essential oils and aromatherapy. I actually went on to do a year long course at college to get a diploma in holistic therapies - full body massage, reflexology, head massage and aromatherapy. I did want to start my own business being a therapist, helping people but didn't really account for how difficult it'd be to start up your own business and working for yourself!

I remember being taken to a woman who did homeopathy. I think we only went once before giving up on that. She was intent for me to stop drinking fluids at around 7pm. With a kidney issue you really need lots of fluids, unless you've been put on a fluid restriction, to keep everything ticking over. She also likes the fact I often had diarrhea as it would detox me.

I always rattled with the number of vitamins my Mum would give me daily. Now I'm a strong believer in only taking what my consultant recommends and I should be able to get it from my diet. So many even natural remedies can react with prescribed medications that I feel it isn't worth risking it.

I was also taken to healing services at the church. I've always struggled with getting my head around and accepting there being a higher being. Obviously having people praying or thinking of you can create happiness through gratitude and empathy but I'm not entirely sure to what extent praying would affect me at all. I also once had 2 men lay their hands on me to heal me which I find incredibly awkward and uncomfortable. I'm now a spiritual non believer. Like nature is amazing and I feel fabulous being surrounded and immersed in it, but to me I don't feel there can be a higher being. There is too much bad in the world, natural disasters, evil people and life just being unfair to great people.

Doctor's are amazing though. Medical science is fascinating and it really has progressed so far during my lifetime already. The chemo I had as a child was experimental, it had never been used on a child at my hospital previously, now it is standard. I've had an ABO incompatible kidney transplant (a tissue match, but from a different blood group) after being on plasmapheresis which lowers antibodies to accept this incompatible organ. I was only the 7th person to receive the treatment in my hospital.

​Day 12: Briefly explain to a healthy person what it is like to live with this illness.

It all requires a lot of pacing, a lot of patience, and a lot of getting to know your body. Living with these illnesses means that I'm unable to do many of the things I want to do, and I have to constantly remind myself to not give up because of it.

Living with these illnesses means being constantly sleepy whether you get 4, 8, or 14 hours of sleep; rarely feeling like you have full access to your brain; constantly being in some type of pain; having your joints constantly give out on you from doing simple tasks such as walking; having your heart hurt and beat abnormally continually out of nowhere; constantly having allergic reactions to who knows what; and unavoidably waking up in the morning feeling like you have the flu. And when it comes to a mast cell disease, your life if full of figuring out continually-changing triggers. You never know if you caught a UTI, the flu, a cold, or some other infection/virus or it's just more inflammation unless you constantly get tests run by a doctor or wait it out.

And like living with other chronic illnesses, it can be difficult to distinguish "normal" pain or sensations from symptoms of your illness. It all becomes normal for you, so there can be a lot of self doubt. Am I overreacting? Is this actually normal?

It's all a constant guessing game.

Eleventh day...

Why do I believe I had cancer?

Bad genetics = bad luck. You don't choose it so it was bad luck, probably I didn't help either. I had very hurtful eating habits that even when it isn't scientifically confirmed could've affected my system. Higher power? I don't know, but after seeing babies and toddlers dealing with cancer... if it exists a higher power it's a cruel one.

Day 2 Living with JHS & hearing loss

My JHS makes me weak and floppy. My joints dislocate easily and go back easily too. But there is pain every time. I need to use muscles to hold my body together, instead of tendons doing it as they do for most people. This is hard work, and explains the chronic tiredness I suffer from. JHS is a collagen disorder, for me it also affects the functioning of my gut, leading to both IBS and Gastric Reflux. The acid reflux has also rotted away many of my back teeth, leading to lots of dental work. JHS is also associated with depression. I've learned to manage it over the years, but it never goes away completely.

I have a 30% hearing loss, in the high tones, where the consonants which define speech live. So I can't hear the difference between f, s, sh, v, m, b, p etc without lip reading. It makes for some interesting misunderstandings. I have hearing aids which help a lot in 121 conversation, but are not so good in large groups or noisy places, so I lipread as well. My brain makes up noises in the frequencies I don't hear, so I also have constant hissy tinnitus. Mostly I just ignore it. Meditation helps.

The combination of chronic fatigue and the effort of lip reading make it hard for me to work full time. I do it occasionally, but generally I work 4 days a week. Working 3 would be even better, but I'm supporting my daughter through uni right now, so that's out of the question financially.

I've tried to manage the fatigue, but regularly fall prey to boom-bust patterns of activity - probably because I work more hours than my body can really cope with!

Day 3 A diagnosis

I ignored my hearing loss until it deteriorated to the point where I could no longer hold a telephone conversation at work. Then I was forced to admit there was a problem. I got hearing tests and hearing aids, which help a very great deal.

The JHS diagnosis was much more random chance. I've been going to various medics for years saying, "I'm always tired.". I've also had quite a few joint injuries over the years. My problems were variously treated, as anorexia, as depression, as low blood pressure and very frequently just my imagination. And joints were fixed with rest.

Late last year, at the age of 49, I decided I must do something to raise my energy levels and went to buy running shoes. This was the best decision of my life (even though months later I'm still not running). The shop owner watched my gait on the treadmill, then looked at me standing still. He shook his head. "I'll sell you running shoes," he said, "but only on condition you see our physio. You can't go on like that.".

I was suffering sciatica anyway, so another physio consultation didn't seem such a bad idea. The physio examined me. "Well," he told me, "the good news is, its all treatable. But its going to take a couple of years."

He went on to explain JHS. All my symptoms fell into a pattern. Someone actually understood what my life was like. More importantly someone BELIEVED me. I cried with relief