Hypermobility EDS

What do you do?

what

What do you do when something beyond your control affects your day, your week, your year, your life.

I bought a hoodie, one of two that I love, from the talented Stacy Hart aka Mama Chill. Both were from her “running on empty” range, which are extremely appropriate for anyone with a chronic illness which affects energy levels. If you don’t know Stacy then please head on over to her blog because she’s one sassy, incredible fighter and someone I respect very much.

Here’s an old pic of me wearing the black one I have (I have another in grey with a different graphic on the front ~ it’s a skeleton running with the words “running on empty” alongside it). Next time I wear them I will have to take photos for you!

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I know that if you follow this blog you are aware that I have a number of chronic invisible illnesses which affect my cognitive function as well as my immune system, energy levels, mobility, gut mobility and cause me pain in my joints and muscles (among a myriad of other symptoms). If you are here for the first time I’ll list them now with the links for further information. Myalgic Encephalomyelitis, Hypermobility Ehlers~Danlos Syndrome, Fibromyalgia, Diverticulitis, Depression, longstanding since my late teens and lastly pesky kidneys, stage 3 kidney disease that currently only requires annual blood tests to monitor.

So now I have that out of the way, I know I’m greedy hogging all these conditions instead of sharing them around, you will understand why often I have to adapt to circumstances beyond my control.

Referring back to Mama Chill, she is quite the wordsmith and wrote a poem about M.E which, to be honest, could be also written about my other conditions too ~ especially the Fibro and HEDS..

d87d7b3777dab11a969faf1f5f35b9ba--fatigue-syndrome-fibromyalgiaIt’s exceptionally frustrating to not be able to plan to do things ahead and know 100% that you will be able to make it. I do plan ahead, try to take in all considerations, make contingency plans, but even then I can’t guarantee that on the day, despite all preparations, I will be able to do it.

So, what do you do? Is my question, to try to live a life to the fullest whilst also managing your physical and mental health to the best of your ability.

One of the girls doctors came up with a brilliant analogy, which I prefer to The Spoon Theory written by Christine Miserandino. Although the spoon theory is great, for me, the car analogy seems easier for me to understand, clearer I suppose.

Imagine your body is a car. Not a bright shiny new one but a real old banger, the exhaust is hanging low and smoking, the speedo is broken, it’s not economical and is covered in rust. It’s old, its rough around the edges, not a great beauty to be honest ~ but it drives, it tries, it may need jump starting now and then, the battery becomes flat easily so you keep a charger in the boot, along with the jump leads, spare tyre, fuel caddy and the portable tyre air compressor which plugs into the cigarette lighter. Knowing its age and potential for breaking down you also keep a blanket, bar of chocolate (supersized), warm coat, warning triangle for the road as the hazard lights don’t work and a portable mobile phone charger for that AA call ~ your poor car is too old to have built in usb chargers and you daren’t overwork the poor cigarette lighter in case you need it to plug in the tyre air compressor.

Our bodies with chronic illness are like the old banger ~ our gas tank may have a few corroded holes in it too, so no matter how much fuel you put in it, it continues to trickle away meaning you don’t get as far as you would like on it and need to take frequent stops to top up.

Like the old car, we can prepare as much as we can to deal with any issues but can’t always foresee a major break down, when the tow truck has to be called in and major repairs carried out.

We love our old car, it’s weathered many storms despite all adversity and we can’t afford to trade it in for a new model anyway.  Instead we scour the papers and news outlets for news that fixes have been found for our model of car, that we can patch it up and the garage will work it’s magic until it is like new, highly economical on fuel, exhaust is secured and no longer smoking and we know we can rely on it come hail or snow.

We are at the stage with my illnesses where we are still scouring the news, no fixes have been found ~ although many attempts and trials have been made. We have to be patient and sit it out, hoping that a mechanic somewhere will have a moment of genius and figure it all out.

That analogy makes more sense to me than spoons ~ which perhaps is just because my brain can see the picture more clearly that way.

So, what do I do? I wait, I hope and I do whatever I can to help myself feel better, do better, plan better. I don’t always get it right. I often run out of fuel halfway to my destination and spend more time than I would like on the ramp in the garage with mechanics scratching their heads before patching me up and sending me on my way.

Life isn’t bad though, it could be far worse. Humour is a factor in how I can deal with the cards life has dealt. Plus my dysfunctionally functional family around me keep things interesting and none of us get to keep the “I am considerably more poorly than you” t~shirt.

I wait for medical breakthrough.

I wait for awareness to break through to the masses.

I wait for compassion and understanding from others, who as yet don’t understand the limitations these illnesses bring.

I wait for health care professionals to all be on the same page and following current protocols instead of those initiated by dinosaurs from the past.

“One day” I tell myself “one day we will find a way around these illnesses and reclaim the life I want for myself and the others who are suffering too.”

Hope must be kept alive, yes you can chunter and swear until the air turns blue to vent, to blow off steam ~ then re-centre and continue forward.

Remember ~ there is life in the old banger yet!

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x~X~x

 

Crash Bang Wallop & WTF?

This morning I woke after a night spent tossing and turning in extreme discomfort. If pain were a person then he is walking inside my body wearing hobnailed boots and stomping on every joint, every bone, making them feel tender to move or touch. Then to turn it up a notch it feels as if fire ants have been released into my veins, making my skin feel as if it’s been scalded.

I wonder to myself whether my previous blog about progress tempted fate. I am now in what is known as a “crash” or “relapse”. My body is making it difficult for me to do anything at all ~ I try to distract myself from the signals firing off from my pain receptors. Tapping my hand to try and distract my brain and ignore the pain signals helps a little but then I tire, stop and it hits me again. The waves ebbing and flowing, crashing down on me in varying levels of violence.

I am downstairs, not in bed because I can keep an eye on the dogs and I feel less of an invalid being here. I have access to a downstairs loo, the kettle, the garden and the internet ~ the sofa and footstool are pretty comfy and my slanket is cosy and warm.

22016167_10155734584339555_1765706235_nI am writing this blog in dribs and drabs from the comfort of my sofa ~ having the option to dictate is a huge help but I have to manually correct the typo’s ~ it would appear I need to learn to enunciate more clearly.

I’m resting, taking the tablets, applying heat (which is soothing for me as opposed to cold), applying topical pain relieving gels, anything I can get my hands on to ease the pain, whilst looking for distractions for my mind.

I have no idea which illness has triggered this response, I am thinking most likely the fibromyalgia, but could also be a combination of all three, ME, Fibro and HEDS. So I am burying myself away for a few days, hibernating until the pain abates. Everything is on  hold ~ no photography for a second week in a row, it’s fair to say I’m feeling a little ticked off.

My mood is up and down, it’s hard to stay focused and positive when you are not able to control your own body, that it lets you down without any warning. I am feeling angry, sad and frustrated at life, I’m seriously pissed off and have so many whys that I know cannot be answered. I suppose it’s just life, I am lucky things aren’t worse but sad that they are what they are.

My black dog is waiting to be released, he knows I am weak and is ready to take advantage ~ I am trying my best to control him. To remember the lessons given to my by my therapist and not to allow him to regain control.

It’s hard! He’s howling for release, ready to jump at any given moment.Black Dog FlamesMy weapon of choice is laughter ~ I am fortunate that my family follow the same path, when times get tough, we go a little insane and let the laughter out, it may be a little scary and manic but it provides a release.

So talking about laughter I share with you my “what the fuck?” moment from this morning.

I came downstairs for a warm drink, tablets and to relocate from my bed. Looking across at my dining room table from my vantage point by the boiling kettle I notice something decidedly odd about my plant.

To fill you in this plant was a birthday gift from my dad which I received in May. It came in a pot and only had one shoot ~ it was a cutting he had given me from a plant he had at home. What it is we have no idea, the general consensus is that is its some kind of lily.

I was told by dad that it was a patio plant and to keep it outside ~ one day outside and it was decidedly worse for wear so I decided to bring it inside. From it’s position from the dining room table it has plenty of indirect light and is protected from the battering wind.

Since being on my table it has grown and we now have 3 leaves. It would appear that overnight something strange has also happened..

Now, how on earth? The mushroom next to the stalk of my plant is actually coming from the stalk!

ALSO, to top it off hundreds of tiny weeny flies are coming out of the soil, which looks alive with them and running around over the table! Thankfully my hubby is ex~pest control and had some bug spray to curb the wee flies from expanding their ranks whilst also not being toxic to my lily ~ or is it Alien Plant?

If you are of the green fingered variety I would love to know what this plant is and also how on earth it birthed mushrooms and teenyweeny flies!

Writing this blog has helped pass the morning for me, now it’s time for a nap ~ and hopefully some respite from the pain and discomfort.

Hope your are having a good day, if you are sending you a crisp high five ~ if not sending love and sympathy.

x~X~x

Progress//Small Steps

I’m not sure whether to share yet or not, feeling that progress is slowly being made and am quietly optimistic that more will occur over the following months.

Having a piece of kit on my wrist that monitors my heart rate, steps and sleep pattern is hugely beneficial in seeing what triggers my body.

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I have found that when I am quietly sitting my heart rate is that of someone exercising. Getting up, showering, walking ~ spending any energy really, causes my heart rate to increase further.

Also, with sleep I have found that I have very little deep sleep and mostly spend the night in a state of light sleep.

Having this information available means that I can be careful in how I plan my time and pace.

Historically I’m not great at pacing, when I have energy all I want to do is get things done and end up exhausted and regretting my expenditure of “spoons” when lying in bed and unable to do anything.

Taking into consideration of my on/off ability to pace I am still happy to report that progress is being made.

I also have become fully sober, no more forays in the alcohol department. My body can no longer tolerate any kind of alcoholic beverage, which means from now on I will be getting jiggy with the soft ones instead.

First off, I finally feel that my balance of medications is helping to keep the pain within the range of cope-able ~ not gone but at least not severe enough to reduce me to tears anymore.

I currently take a mix of prescription and over the counter medications of:~

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Gabapentin Capsules ~ 300mg three times a day For pain relief; can increase dosage in the future if needed

Vitamin D capsule ~ 4000iu  As I have below normal vitamin D level

L~Carnitine ~ 4 Capsules Daily. As advised by my Fibro group, it helps with cognitive function and energy levels.

L~ Glutamine 500mg ~ 3 Capsules Daily To assist my gut and improve autoimmune system.

Amitriptyline 75mg Daily ~ for Depression, controversial among my doctors ~ I have tried all the other anti~depressants and none of them work for me, Prozac reacted very badly and I collapsed. Amitriptyline was prescribed for me for my bouts of post~natal depression after my daughters births and it was hugely effective. When I become depressed I become manic and need a sedative antidepressant to calm me down. Apparently doctors now don’t prescribe this medication for depression as it can cause a high rate of suicidal thoughts. For me however it is calming and helps me keep my black dog under control. The doctors have allowed me to take it on repeat so long as I promise to contact them the instant I have any detrimental thoughts towards my life.

Laxido 2~3 Sachets Daily I take it for my Diverticulitis, to keep things moving and not to get caught up in the pouches.

On top of taking the above medication I have found that wearing compression socks is really helping my poor swollen ankles and when wearing them my swelling reduces by half ~ which is fabulous! They are really comfy to wear and are breathable ~ so no smelly feet.

I have changed my diet ~ instead of eating and picking bad foods during the day because of not having the energy to cook I have a Huel Shake. Its made from oats, so no soy tummy upset from it and it tastes lovely ~ if you like oats that is. I tend to prefer just the vanilla version without flavour boosts, but if I do fancy a boost it’s chocolate every time.

Then at the end of the day I have my dinner with Dave and he usually helps with the preparation and cooking. From just this small change I have gone down a jeans size to a standard size 16, which is brilliant, I refuse to weigh myself as it makes me too depressed, therefore I judge my weight loss by how my clothes fit.

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My final change is monitoring my activity and trying to control how much I do. I still go overboard and do far too much but at least it’s a means to observe where I am going wrong and trying to rein it in. My step count is indicative of my ignoring my body and pushing myself. BUT I am finding I am little by little managing more steps than I ever dreamt possible ~

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The days I go over 4000 steps I really know about it and it’s not easy to get up and get going the next day ~ but I push myself and I am doing it. I am mindful that pushing could be dangerous for my ME but it’s beneficial for my Fibro and HEDS. It is juggling what to do for the best.

I am planning a retreat to the caravan in October, to rest and recuperate and go over all my data to see what level of activity suits my body, listening to how it responds, taking into account pain levels, energy, post exertion malaise and heart rate.

I know every time I get up and move about my heart rate goes up ~ I can feel it in my neck as it pulsates to my heart beat. I know that pain and fatigue hit days after going at 4000 steps ~ but sometimes I can’t avoid having to do those steps as life and commitments don’t go away.

Hopefully the progress will continue slowly but steadily. I hope the weight continues to gradually drop, which will put less pressure on my joints and specifically my ankles.

I am incredibly chuffed with the smart crutches, they give me the ability to walk further than I could before as they help me put less pressure through my ankles and instead of the pressure from the crutches going through my poor weak wrists it goes along my forearm instead. I still get sore shoulders, neck, wrists, hips and ankles afterwards but having the freedom to step out further than before without having to resort to a wheelchair (which would have to be electric as I have no~one free to push me), is wonderful.

I also cannot stress enough the wonders of getting a blue badge ~ and would encourage anyone with an illness which reduces ability and energy to apply for one.I also have stickers on my car saying not all disabilities are visible because I am so sick of people telling me off for parking in disabled bays.

Unfortunately, so far not much improvement with cognitive issues ~ I am still struggling to comprehend information. The girls and Dave sometimes become frustrated with me, not unkindly, when it takes a while for the penny to drop. It can be annoying not only for them but for me, as I struggle to make sense of things.

My photography course is fun and rewarding but I have to read the lessons in small chunks and go over it repeatedly for it to sink in. I struggle to find words and keep up with conversations but mostly when reading conversations on facebook I get overwhelmed and although I want to respond I often don’t because I find it so very hard to put words together to express my thoughts. To be a supportive and helpful friend becomes a hurdle, I always hold my friends close in my thoughts and hope that they know that I am there for them in spirit but not always in mind ~ I have no idea where that wanders off to!

I can only explain my mental state as that of onset dementia, which is why we approached the doctors in the first place 2 years ago. It is a huge issue for me, word finding, correct word usage and following conversations is difficult. I sometimes think half a sentence and speak the other half out loud and not realise, then wander why I’m not understood.

I think not being able to control my brain, to feel so foggy minded and forgetful is the worst symptom for me, more so than pain and fatigue. I feel as if I am losing part of myself, my memories are fading, events of the past are often totally forgotten. The feeling of having no control and that I am losing my mind.

So, shhh aside from my brain *touches wood* lets hope that things continue positively and I apologise if I am a little vague or not as communicative as I would like to be towards you. Fingers crossed that progress is made in the cognitive department soon too, failing that, hoping that my brain power plateaus and further deterioration ceases.

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x~X~x

Meet my new feet!

My new feet arrived this morning, in a large white box via a bemused courier. I don’t think he had ever seen anyone so excited about receiving a pair of crutches before.

These aren’t any crutches, they are far more than that ~ they are smart crutches!

When you order them you have to choose the size best suited for you. To do this you need to know your height ~ for the lower leg length and your forearm length ~ for the cuff size. Then finally you choose the colour you want them in, obviously I chose purple.

Having already watched the videos on how to set them up I ripped open the box and set to it.

They are really very easy to assemble. First you have to adjust the angle for the arms, so that the pressure on your shoulders, arms and wrists is evenly dispersed.

Next, you have to make sure to adjust the length of the arm rest using a wing nut on the side, which you pull in or out to get the right length to suit your arm for optimum comfort.

Finally, you have to make sure that the length is just right. They are very easy to adjust just like normal crutches. Once I had them at a length where my shoulders were relaxed and not pushed up by the crutches I was good to go.

Then ~ freedom to walk without too much pressure through my ankles and weight dispersed evenly through my shoulders, arms and wrists.

All I can say is that these crutches are the bomb, totally awesome and hopefully allow me to walk more and keep that wheelchair folded up in storage for a little longer.

PLUS, with the arms designed as they are, I can still do my photography whilst using them ~ which is a huge bonus.

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I’m off to see my GP later about my depression (review) and ankle pain/swelling, so will be showing her these bad boys while I am there.

Okay, I’m tootling off now to practice with my new feet ~ catch you later.

x~X~x

 

A collection I could do without!

It is fabulous to see the sun shining and have all my windows and doors open. The aroma of freshly cut grass and blossoms wafting in with the wonderful background music of bird song serenading me. Our lawn is looking pretty as covered in buttercups and small flowers.

The sunny weather brings with it some soothing heat for my painful joints all be it from the shade of a patio umbrella. taking great care to ensure I remain hydrated and out of direct sunshine. Too much heat can trigger exacerbation of symptoms so I’m learning to recognize when to call it a day and move inside. Once a sun worshipper I am now a sun dodger and shade seeker. The coast a friend and favorite place of mine, cooling toe dipping in the sea with refreshing sea breezes. Topped of with picnics beneath the old faithful angled parasol, well used, taped up, frequently repaired yet still functioning ~ providing welcome shade. I just wish I lived on the coast, instead we visit as frequently as we can for mid week breaks and long weekends.

It would seem as the years roll on I am collecting labels of illnesses allegedly explaining my symptoms. For years I’ve had IBS, swinging from needing laxido 3 times a day to popping Imodium ~ haemmorhoids and diverticulitis resulted from this & so now have to be careful to not cause a flare of symptoms and Gaviscon tablets and buscopan have been added to the medication required. I also have chronic depression and have been on almost every kind of antidepressant, I have discovered I am scarily allergic to Prozac and that Amitriptyline is my saviour ~ not only keeping my black dog to heel but also helping calm my hyperactive bladder and settle my insomnia.

Gradually these past few years my health has declined markedly. Resulting in diagnosis of Myalgic Encephalomyelitis (ME) beginning of 2016. Then Hypermobility Ehlers-Danlos Syndrome (HEDS) early this year (both these diagnoses by ME Clinic). Then most recently Fibromyalgia (FM) and confirmation of HEDS by Rheumatologist a few months ago. Add to that grumbling kidneys and chronic pain too.

I questioned whether it is possible to have all three of the chronic conditions ME, HEDS & FM together ~ surely it must be just one of these conditions causing my symptoms and pain? To which I was told that yes, I have all 3 and that these conditions often are found to co~exist. If any of you reading this have these conditions too I would welcome your thoughts.

The long and short of it all is that I am in pain, lacking in energy, cognitively challenged and exploring ways in which I can combat these symptoms and improve them ~ again, thoughts, tips, suggestions all welcomed.

I have found wearing supports help my ankles and wrists, but worry about becoming dependent on them and so need to find safe low impact exercises to try and strengthen them without exacerbating the pain to intolerable levels. This is a photo of my ankles first thing in the morning ~ after being elevated all night ~ with my supports during the day they don’t get more swollen, without they do. However they never go down & hurt, especially the Achilles, constantly. My rheumatologist says it’s fluid over my tendons and has not seen bulging swellings like this before. As yet I still have no solution to how to reduce swelling and pain, they could be caused by my grumbling kidneys, my EDS (as over tendons) or leaky heart valve ~ still awaiting heart scan ~ so again any tips or thoughts welcomed.

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Morning ankles

Whilst looking to see if I could find any information about all three of these conditions existing together as a multiple diagnosis I came across this article, which I found interesting, “One Gene, Many Disorders: Could One Gene Help Explain ME/CFS, FM, POTS, IBS, EDS, IBS and Others” written by Cort Johnson. In it he asks ~ “ME/CFS, FM, POTS, IBS, EDS and others often exist in a kind of swarm of interconnected illnesses. All have been maligned at one time or another because of the wide range of symptoms they produce. How could a biological disease cause so many different symptoms?” 

Being diagnosed with ME/CFS, FM, IBS & HEDS I carried on reading, it says “The more researchers looked, the more they seemed to uncover a large group of syndromes which tended to flock together. Anyone who has ME/CFS or FM now has to consider whether they also might have dysautonomia, IBS, POTS, MCAS and a host of other disorders (interstitial cystitis, migraine, multiple chemical sensitivities, small fiber neuropathy).”  Wow, so it is possible to have all of these together! My question is what can be done as both FM and HEDS are prescribed exercise as part of the treatment, along with pain relief ~ but with ME exercise makes the illness so much worse ~ plus there is Post Exerting Malaise (PEM) to consider with ME too!

Further on in the article it says some research had found that these conditions show genetic changes in common and therefore likely to be hereditary too. the study offers hope for sufferers with further research possibly finding ways to combat the conditions. “Elevated basal serum tryptase identifies a multisystem disorder associated with increased TPSAB1…It’s rare that genetic effects are so clear. In fact, the genetic effects were so clear that the condition is now called hereditary-a tryptasemia. This disease is “exclusively caused” by increased copy numbers of the tryptase-producing sequence. Exactly how elevated tryptase levels are causing pain and autonomic nervous symptoms is not clear but may involve “protease-activated 2 receptor pathways” (if that’s any help – lol). The study highlights, though, that it’s not necessary to understand a disease to find a treatment for it. Knowing that elevated tryptase levels cause pain, connective tissue problems and orthostatic intolerance, even if we don’t know how, can allow researchers to develop anti-tryptase blockers that could conceivably stop these symptoms in their tracks”

I am cautiously optimistic about this news as so many “breakthroughs” come to nothing but hope this one continues to work on finding ways to combat these illnesses with treatments successful in allowing sufferers reclaiming their lives.

Until then, which I anticipate will be many years yet I am waiting for follow up appointments, further investigations and a meeting with my GP to discuss further pain relief options along with ways to work with my joint strength and swellings.

Today is a high pain day ~ distraction therapy helps, writing this blog, sharing with others helps. I hope if you have these conditions you don’t feel so isolated ~ I am here and open to communication, friendship and mutual support. Also open to discussion about options and treatments that work for you, how you self care and cope.

I will leave you with an image that made my poor postie jump ~ a tight shiny face mask on a face with hair scraped back under a bandana ~ poor bloke 😂.

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To top off my day our little Loki has come in from the garden, plonked himself on me and promptly fallen asleep and he STINKS! I have no idea what he’s rolled in but when hubby gets back to help he will need bathing ~ as Loki despises baths making it a two man job. Taylor on the other hand has taken up position ~ far away from stinky, to guard and warn us of any rogue cats, squirrels or birds, I may need to dig out the ear defenders!

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Hoping today is being kind to you and that the sunny weather isn’t too uncomfortable for you. ‘Til next time sending strength and love your way.

x~X~x

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