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Any form of stress has the potential to cause a flare. It could be physical in the form of having done too much or in the form of a cold or flu. Or it can be mental.

This is not to say that Fibromyalgia is “all in your head.” It’s not. But depression and anxiety are common in sufferers of chronic illness. After all, we have lost a lot. Our health, our independence, often our jobs, social lives and ability to care for others. Once upon a time, we were house-proud, enjoyed gardening, walking the dogs, social activities and work. Now there are days where getting from the bed to the bathroom is a struggle. It’s bound to get you down.

Add to that an extra stress and the Troll rears his ugly head – and brings the family. In my case, we have recently lost our fur-baby Terry. We knew we didn’t have much time left with him, but his loss has still hit me hard.

So I allowed myself to take a few days to indulge. Personally I am a bit of an emotional non-eater, but I love to cook. So, I baked cakes that I can’t eat, I made toasted muesli (that I also can’t eat), 2 vegetarian lasagnas (one of which I can eat!), GAPS friendly bread and GAPS friendly waffles. I also made an awesome brie stuffed chicken thigh, which I’ll post the recipe for soon.

Now I’m exhausted, but so far, I haven’t flared too badly. The Fibro-Troll is sitting in the background, thumping his club on his hand in a very threatening manner. Last time I lost a fur-baby I had a flare that lasted weeks, so I have to make sure that I take it a little easier. I’ll hop in my HBOT chamber, have a long soak in the bath with Epsom salts and try very hard to take it easy.

I have given myself permission to grieve, and I think that this is part of the key to not having a massive flare this time.

My very non professional advice for dealing with grief is fairly simple.

• Give yourself permission to grieve
• Find something you enjoy and do it at least once
• Keep up with self-care. Remember to eat healthily, have a long bath, go for a massage if you can
• Take the time it takes to heal.

Now, I’m going to try very hard to follow my own advice.

Only someone with a chronic illness knows how truly terrifying this question is.

When it is just a platitude, or coming from someone I barely know or probably won’t see ever again, then it’s not so bad. I can plaster on my fake smile and say, “fine thanks, and you?”

But when it’s family or a friend, someone I care about (and who cares about me) then I dread it. Partly because they really do want to know. I don’t like lying to people I care about. I also don’t like to whine. Also, I don’t really want sympathy. I want people to understand, but I don’t want their pity.

If I’m at the BBQ, birthday party, casual catch-up or whatever, then I’m probably having a good day. That doesn’t mean I am symptom free. It means that my dizzy spells are short and don’t make me too unstable. It means my pain levels are at around a 3 on most people’s pain scale. It means my IBS is under control and that low-grade nausea that I regularly deal with is currently abated. It means I had the energy to have a shower and put on make-up. I might have needed to sit down for an hour after that, but I managed. It means I have taken extra medications and probably did nothing productive the day before. It means I got down the stairs of our high set house and I’m reasonably sure I’ll be able to get back up them.

So how do I answer that dreaded question? I try to be as honest as possible. I say it’s a good day, I smile and change the topic. If they ask again, usually because they are genuinely concerned, then I talk about the latest thing I am trying in my quest to battle the FibroTroll.

I don’t tell them that it means that I’ll have a soak in the tub with Epsom salts and a session in my HBOT chamber to try to avoid having the Troll send me to the debt collectors! I don’t explain that my poor Knight in tarnished armour will have to pick up his shield and sword and tackle all the things that will need doing when we get home. He’ll run the bath for me, then he will have to help me out of the bath, and probably help me dry myself and get dressed. He’ll help me get in and out of my HBOT chamber. He’ll make dinner and clean the kitchen, and if he wants some music on, it will have to be through headphones, so the noise doesn’t aggravate the Troll.

If the function is a big event like a wedding, then I’ll be there even if it’s not a good day. On those days, I dread the question even more. How do you tell the happy couple on their special day that it feels like your skin is on fire, your joints and muscles ache, noises are making your ears throb in a way you never thought they could before you got sick? That you couldn’t even get your own shoes on and your sense of worth is hovering down somewhere near the Titanic? How do you say that, really, all you want to do is curl up in bed and cry?

Those days, I lie. I plaster on that fake smile, tell them I am doing well, and change the topic. It’s easy to do at a wedding, you comment on how beautiful the venue is, how lovely the service was, how great the bridal party looks. There’s endless things you can change the topic to at a wedding. If there’s one thing the FibroTroll has taught me, it’s how to change the topic away from my health.

But long-term, that’s not going to help. Fibromyalgia is becoming more and more common. I regularly hear of someone’s friend or cousin who has either had it for years or just got diagnosed. I am a part of several support groups where people don’t have friends and family who are as genuinely caring and understanding as mine are. For these people, I need to learn to tell the truth more often. I need to answer that dreaded question, in a way that spreads understanding. So, I’m going to try.

The first step in that journey was to start this blog. Partly, I’m writing for myself. I am uncomfortable talking or writing about myself. I dislike dwelling on the pain, the isolation, the sense of loss that comes with giving up your job and independence. My psychologist has been helping me find a new, meaningful life that works with my Fibromyalgia not against it. In writing this blog, maybe I can form a semi truce with the Troll and we can work out a more consistent toll. And partly, I’m doing it for the other Fibro-warriors out there. If something I do helps one person get a little bit of relief from their symptoms, or if something I write helps one partner, friend, or family member of a warrior understand, then it will have been worth it.

People who do not have a chronic illness cannot empathise with the struggle of being sick EVERY SINGLE DAY. But the more people know about Fibromyalgia, and the more awareness there is of this bloody awful illness, the more understanding there will be of the struggles we face. If you are a “normie” (a person who is not chronically ill) please stop before you ask that question. If your chronically ill friend or family member looks like they are struggling, maybe ask if you can get them a chair, ask them if they’ve read a good book lately, or seen the latest episode of that show you like. Give them something other than that dreaded question to answer. If you really want to know how their health is going, ask if there’s been any new research published, or if there’s a new treatment they are trying. Giving them a gentle hug and saying, “I’m so glad you made it, I was hoping you would be having a good day today!” will do so much more for a chronically ill person than forcing them to find a suitable answer to “How are you?”

 

 

This is Terry.

Terry is my cranky old kitty. He is 16 years and 10 months old. He bites people if they touch his belly, but he loves to show it off. I have to gas him with anaesthetic gas in order to get blood out of him, or really do anything invasive. (It’s ok, I used to be a vet, before the Fibro Troll took that away.)  He doesn’t like cuddles, but he likes to hang out next to you, or lean on your leg while you are sleeping. He is aloof, contrary and he might have been a dragon in a past life and I love him to bits.

He’s got hyperthyroidism (overactive thyroid gland) and his kidneys are failing and he needs medication twice a day and special food and has worked out a new level of demanding. He knows he gets tin food with all his medications, so he refuses to eat his regular dry food. He also expects you to sit with him and feed him little bits of food until he is full. He is underweight, so I can’t just use tough love and walk away. But that’s ok. He is my fur baby and I doubt he’ll make it to 17. So he gets (almost) whatever he wants.

He likes helping me sew. And by helping, I mean getting in the way while I try to cut fabric and expecting pats.

 

 

 

And stealing my yoga mat. 

He does not like us to go away.

 

 

 

 

 

But he will happily sit in a masking tape square on the floor or in a box.

 

 

 

 

 

 

 

 

And he takes a mean selfie.

 

 

 

My Cranky old man only worked out how good laps are to sit on in the last few years. He only does it when it’s cold, and only if you have a blanket or dressing gown over your legs. It’s one of the few things I love about winter.

He hated our dogs, and only just tolerated our other cat, so when he became an only fur-child 2 years ago, we decided not to get any more pets. We did get the aquaponics fish pond (I’ll write about that another day) but he just thinks that it is an oversized water bowl for him on the deck.

And speaking of my endearing little dragon. He just walked past, gave me a very pointed look and headed outside to the deck. The deck is the only outside he gets these days, so I might head out and join him for some sunshine.

One of the many frustrating things about Fibromyalgia is the lack of fun. I often have people tell me that it “must be nice” to have the time for a 2 hour bath or to read a book all day.

What they don’t understand is that those 2 hours in the bath, they are because it hurts too much to even lie in bed. So sitting in a nice warm bath where the water supports your body without too much pressure on it, might be the only relief you get that day. Epsom salts will help make that 2 hour bath give relief for a few hours afterwards as well.

Reading that book? Yes, I admit, I enjoy reading. But sometimes I do it to hide from the pain and fatigue that is preventing me from doing other things.

The Fibro Troll has taken a lot of thing from me. I had to stop doing the job I love. I spent my whole life working towards that goal, I spent 5 years at university, worked two jobs in my final year and somehow still managed to have a social life. I worked hard in that job, did all the normal things people do – housework, social life, etc.  Then bam! The Fibro Troll invaded my life and took all that away.

Now I have to make sure that there’s only one thing scheduled for a weekend. If I go to a BBQ or a birthday party I have to plan ahead. I usually bring my own food, I have to make sure I rest up before hand for a day or two and make sure I sit down a lot.

If I go to a wedding – and I love weddings – I know that the next week will be spent in bed or on the couch or yes, I will spend 2 hours in the bath or read a book. I won’t do housework that week. I’ll be lucky if I can cook dinner. So my darling knight has to take up the slack – again.

So next time you tell a person who is chronically ill, that it “must be nice to have time to relax” they’re probably thinking – “it must be nice to have the energy to clean your own house.”

 

In mid-2012, I was diagnosed with Fibromyalgia.

It didn’t come as a big surprise as I had been unwell for some time. I was told that some people get better and if they do it is generally in 2-5 years. I was quite sure I would be one of those that got better. I cut back on work, I tried multiple medications and a few months later stopped work completely. 2 years went by. I spent much of that dealing with income protection insurance and dealing with the side effects of medications. 3 years went by, I kept trying new things, more tests, a new specialist, new health professionals, but I just kept getting worse. 4 years went by, same shit, probably even the same bucket.

It has now been 5 years since I was diagnosed. I’ve been through many of the stages of grief. Some of them multiple times. I am slowly coming to terms with the possibility that I’m not “one of those”. I may not ever be well enough to return to the job I love, or to go out drinking and singing (I use the term singing very loosely) karaoke until midnight or beyond. But maybe I can find another, different, just as meaningful existence. 

I’ve found some things that work for me. They either help me feel better, through reducing specific symptoms, increasing energy, or helping to make day-to-day tasks a little easier. I’ll share the things I’ve already tried. I’ll let you know how much they helped and in what way. I’ll try new things, and let you know how they go, and I’ll let you know what things make me worse.

I hope you’ll join me in this journey and if, in the years to come, I do become “one of those” who gets better, then I’ll host a karaoke party and everyone will be invited!