Myalgic Encephalomyelitis

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

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

It’s all about ME! #InternationalNursesDay #InternationalMEAwarenessDay #May12BlogBomb

Today the 12th of May 2017 it’s all about ME!

Why is May 12th both International M.E. Awareness day and International Nurses Day? The date chosen for these two days is down to just one very special and significant person ~ Florence Nightingale. 12th May was Florence Nightingales birthday, she was a nurse of great talent, foresight and knowledge, plus it is alleged became unwell later in life with what is now known as ME.

Having these two days together is very apt I think, considering I am both nurse and ME sufferer I have a day where I can celebrate those who care for the sick and also raise awareness about ME.

Our Flo’ was quite the woman, an article on the ME Association website gives a little background about her, which I will abbreviate for you.

Florence was born 197 years ago today in Florence Italy, her parents were wealthy English folk. When she reached womanhood she took up nursing, which she felt was her calling. She was given the name “The Lady of the Lamp” after she cared for British soldiers during the Crimean War.

She has been credited with writing the first comprehensive text for nurses and founded a training school for nursing in London. She was also incredibly clever with numbers too.

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A pledge was created in 1893 for nurses by Lystra Gretter along with the Committee for the Farrand Training School For Nurses in Detroit, Michigan. It was called “The Nightingale Pledge”, in honour of Florence Nightingale. The pledge has been modified a little since the original version. Nurses in America recited the pledge at their qualifying “pinning” ceremony. I am unsure about the UK, I know I didn’t recite it when I qualified, so presume it’s a tradition held by American nurses. The original pledge was…

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It is said, from 1857 Florence became disabled by poor health. Her ailment is said to have been what we now know to be Myalgic Encephalomeylitis (ME). This is why she has been adopted as the “patron saint” as it were of ME, and why 12th May has become the International Awareness Day for ME.

mecfs_nightengaleBefore I gained my nursing qualification I nursed my Nanna who lived with us. As she became more frail, she struggled to care for herself. She allowed me to help her in all aspects of daily life and personal care. We grew very close during this time which was a gift and I cared for her until she passed away. I was honoured that she allowed me to be there for her.

Following her passing I started my nursing training and even though I no longer use those skills in a professional capacity they have been enormously useful in my private life caring for family. Years ago, from the age of 14, which is when I started working in nursing homes as well as caring for my Nanna, my mum gave me the nickname “Nurse Nuttley”. She was thrilled when I finally earned my nickname and even though mum has passed we still use her nickname for me whenever my “Nurse Nuttley” persona is needed.

So today I am reminding myself that my nursing qualification has not been wasted. I am still using the skills I learnt today, just not in a hospital setting. I am exceptionally proud of my “nurse” title and so share with you my memory of my nursing days..

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The antique buckle on my belt was a qualifying gift from my mum.

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My certificate

Then I share with you the date of my official diagnosis, I was told I have ME following the correct diagnostic criteria, and at every appointment it was referred to as ME, even on the handouts we were given at rehab group therapy. However, annoyingly, although the hospital called it ME, the diagnostic letter says CFS (Chronic Fatigue Syndrome) because that is what the hospital have been told to call it! Sounds petty but I loathe the CFS tag, it is not ME. This needs to change along with many protocols still used to treat the illness.

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Relief to have a diagnosis, but sadness that this is what I have.

Incredibly, awareness about this illness, especially within the general medical arena, is still poor. We are still lacking in specialist doctors, nurses, physios, OT’s etc to care for patients. Most of us end up in a general clinics, without the properly trained or informed medical staff to advise us and care for us. However, charities such as Invest in ME Research, TYMES Trust, Let’s Do It For ME and Me Research UK are all doing everything within their power to inform, educate and lobby health care professionals to try and change the facilities and availability for the specialist care we need. This is because if the illness isn’t managed correctly the patients can become significantly worse, which for some is permanent.

So, a few bite size facts for you about ME.

  • Currently it is estimated that some 250,000 people in Britain are affected by this illness.
  • It goes by the names of Myalgic Encephalopathy/Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Post-Viral Fatigue Syndrome (PVFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)
  • It can affect people of any sex and age, in some cases in children as young as 2 years old.
  • Women are 3 times more likely than men to get it.
  • A quarter of sufferers are housebound or bedbound.
  • Brain fog is a real and unsettling symptom, it means you struggle to concentrate, find correct words, read, write, listen to music, watch TV, memory problems and struggling to keep up with a conversation. Over stimulation is a real issue combined with brain fog. When I am surrounded by sights, sounds, smells and crowds of people, such as in a shopping centre, then often I become too overwhelmed and have to leave. It is exhausting trying to filter through all the senses and stimulation and often can lead to a relapse and post exertion malaise.
  • Post Exertion Malaise (PEM) = this is delayed, often by 24~48 hours exhaustion and exacerbation of symptoms following either physical activity or mental, cognitive activity. For us as family we find cognitive exertion causes worse PEM symptoms than physical. PEM is a highly characteristic clinical and diagnostic feature of ME and considered in some respects to be an illness within an illness. (ME Association)
  • This illness affects every system within your body. It is not just exhaustion, it can cause severe joint and muscle pain, swollen lymph glands, sore throats, dizziness, nausea, headaches, low blood pressure, shortness of breath, unrefreshing sleep or insomnia, high heart rate, abdominal/gut issues, sensitivity to light, noise, touch, smells, foods,  cognitive issues like those explained earlier ~ these are but a few symptoms but are the most common for sufferers.
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Cheeky info-graphic regarding ME Symptoms

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I like the simplicity of this example of life with ME

So on today, International Nurses Day, I would like to say to all of the nurses worldwide I offer you my heart felt gratitude and utmost respect. I humbly thank you for your dedication, hard work, empathy, strength, humour and commitment to giving us, your patients, the care and support we need in our darkest times. I want to acknowledge that I have the deepest respect for you working in conditions far from ideal, on pay that could be much better. You often face long arduous shifts with very little thanks, sometimes come under abuse, and can be lacking in support, staff numbers and in some cases equipment. So quite simply, thank you for all you do.

Also, for International ME Awareness Day, I share with you this video which explains our journey with the illness, I hope you like it and find it informative and not too boring…

Finally, I would like to thank you for taking the time out of your day to read this blog, it means an awful lot to me that you have. I will leave you with a House MD gif, because I adore House  and this tickles my funny bone, plus the final word from our Flo’.

Did you try the medicine drug - Imgur

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x~X~x

Our Glastonbury Walk for ME 2017

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Walk for ME was the brain child of Luke Remnant, Sarah-Louise Jordan and Ian McPhee and was founded in 2013. As a family we have supported this event since the beginning, so not only is it the 5th year anniversary for the fundraising event but also our 5th year of participating.

Since May 2013 The Walk for ME fundraising teams have grown from initially doing fundraising walks to also incorporating events such as sponsored swims, runs and rides across the UK, Ireland, the Isle of Man, France, Spain, Malaysia, New Zealand and both coasts of America.

The Walk for ME Team events have raised over £70,000 including gift aid so far.

This first picture is us in 2011, when Tara hadn’t long been diagnosed. We knew very little about the illness and even less about how to manage it. This photograph was taken before we did a fundraising walk for the The Young ME Sufferers Trust (TYMES Trust) ~ so not part of the “Walk for ME” fundraising, but included it as it was our first fundraising walk to help raise funds towards helping those suffering from ME. We walked 5 kilometres during the Easter Weekend in 2011.

Mawer Family Tanya (Mum), Tara (11), Dave (dad), Keisha (oldest sister aged 14) and Tasha (middle child aged 13)

Our first ME fundraising walk for TYMES Trust ~ from left to right Tasha, Keisha, Tanya, Dave & Tara in the front in the wheelchair

Here is a wee glimpse at our previous Walk for ME fundraising events and a few photos, it’s incredible how much we have changed over these few short years…

In 2013 it was just myself and Keisha who did the walk along with our two Border Terriers Taylor and Skyla. We walked a 10 mile route along the Cranfleet Trail which is a canal side walk with countryside either side of the canal. We were surrounded by swarms of midges the entire route. By the end of it we were damp, muddy and exhausted ~ but thrilled that we exceeded our fundraising target which made it all worthwhile.

2014 saw all of us doing the walk, but this time both Tasha and Tara were in wheelchairs as not well enough to walk. Again we went along the Cranfleet Trail because it’s such a lovely canal side walk. It was warm but windy, hence the windblown hair and Keisha who had not long since cut off her dreadlocks and shaved her head for Invest in ME Research had dyed what hair she had blue for ME.

Then for 2015 Keisha once again joined me along with her friend Paige. We yet again decided on the canal side walk of previous years (the pub for a drink afterwards was a great lure). We were very lucky with the weather and had a very enjoyable walk, although I was dragging my feet and suffering from very low energy, so the girls, being lovely, hung back to walk with me. Little did I know then that ME was causing my exhaustion as I had yet to be diagnosed.  Dave and Tasha stoically saved our seats in the pub beer garden whilst we were walking and had glasses full of cold liquid refreshment ready for us on our return. Tara was home in bed as not doing so well on the day.

2016 and Walk for ME was my birthday meander as my birthday falls during ME awareness week. I knew by now that I had ME and so took a slow winding route to the beach and back, with many a rest on the numerous benches along the way.

So now to 2017, our Walk for ME this year was walked by myself and hubby Dave, along with our two dogs Taylor and Loki. Due to my reduced mobility I utilised the aid of my faithful crutches and manned the bumbag full of dog treats and poop bags whilst Dave juggled the dogs. We decided to walk up the “hill” to the Tor for our walk but after a pre~walk check Dave realised the walk from the town car park to the base of the mound was way too much for me. Thankfully a very kind man let us park in his driveway as he lived at the foot of the Tor entrance. So, relying heavily on my crutches and ankle/wrist supports to get me there and back we set off. We had to take many a rest breaks as I struggled, especially on the way up. Once at the top we flopped onto the grass to rest and drink in the scenery. It was a lovely day and we thoroughly enjoyed just sitting back and chilling. The dogs welcomed the break too. Finally, once I felt strong enough, we started our descent. This was hard going too for me and the last part of the descent my legs from thigh to toe were trembling and “popping”. I honestly thought my legs were going to go from under me which made me panic a little. At last, and with a huge sigh of relief, we reached the car. Getting back out of the car was a trial ~ Dave parked directly in front of the cottage door and I sort of stumble walked in and collapsed on the sofa. My feet are like footballs and my legs don’t want to carry me BUT I DID IT! So now I will have to be good over the next few days and rest to recuperate from the exertion, no doubt PEM will kick my arse so behaving myself.

Here is a slideshow of the photos we took of our day, I hope you enjoy it…

It’s not too late to donate to our fundraising page. You can either donate via text ~ by following the instructions in the graphic below (the amount doesn’t have to be £5, that was just an example, you can donate whatever amount you wish)…

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or you can donate via our fundraising page on justgiving, in which case just click the link below…

https://www.justgiving.com/fundraising/Dave-And-Tonks-Walk-For-ME-2017

x~X~x

Invisible Chronic Illness Awareness

The months seem to be merging into one another, time is passing quickly and we are almost in May once more.

Many illnesses have their own awareness days, weeks or months. May is significant for our family as it celebrates the awareness weeks for both M.E. and Mental Health, both of which our family have to face day in day out.

I had a quick search (and apologies for any I have missed) and found the following awareness, days, weeks and months which are celebrated in the UK during May: ~

Awareness Days for;
2nd May: World Asthma Day
10th May: World Lupus day
12th May: International ME Awareness Day
17th May: World Hypertension Day
18th May: World Aids Vaccine Day
19th May: Spinal Cord Injury Awareness Day
20th May World Autoimmune Arthritis Day
29th May: World Digestive Health Day
31st May: World MS Day

Awareness Week for;
Wed 3rd ~ Thu 11th May    Dystonia Awareness Week
Mon 8th ~ Sun 14th May    Action for Brain Injury Week
Tue 9th ~ Mon 15th May    Coeliac Awareness Week
Thu 11th ~ Wed 17th May    Huntington’s Disease Awareness Week
Thu 11th ~ Wed 17th May    M.E. Awareness Week
14th ~ Sun 21st May    Arthritis Care Awareness Week
Mon 15th ~Sun 21st    May Dementia Awareness Week
Mon 15th ~ Sun 21st    May National Epilepsy Week
Tue 16th ~ Mon 22nd  May Mental Health Week

Awareness Month for;
Action on Stroke
Cystic Fibrosis
Hepetitis Awareness
Lyme Disease Awareness

I noticed, and it’s quite apt I suppose, that my birthday (17 May) falls within both Mental Health and ME Awareness weeks ~ the powers that be must have known!

*clears throat*

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As a family we are huge advocates of spreading the word, raising awareness and fundraising for our chosen charities because they are so underfunded and yet the work they do is so desperately needed. It is amazing how many folks we have come across within the medical profession who have no clue what ME is ~ that pretty much astounded me. Also what deflates me and makes my stomach drop is when they have heard of it but they either choose not to believe it exists or that it is a psychological illness and therefore to be treated by graded exercise therapy (GET) and cognitive behaviour therapy (CBT). Both of which in the early days we were involved in, with the result of worsening our condition, not improving it ~ nor a cure as they would have folk believe.

Very few health care professionals are aware of the severity of the illness, how to help relieve symptoms and offer the patient support and understanding. Having someone say “I believe you” and that they understand the full diagnostic criteria for diagnosis and symptom awareness, how to help (other than forcing GET and CBT) is incredible. This is why raising awareness is so very important to me. If it isn’t getting through to many doctors and nurses then how in the heck are we supposed to get the general public to be aware too. So many people say “yeah, yeah, you have ME, that’s what lazy folk say to get off sick and claim benefits. I would love to stay in bed all day and be lazy like you.” Which drives me nuts! Also when people say, “oh did your girls not like school then”, assuming they were taken home to be schooled and not have any social life or peer interaction because they didn’t want to go to school ~ oooh ~ makes me want to rant!

*Reining it in*

SO for this years ME Awareness project I decided I would make a new awareness video, to try and get the message across to anyone who didn’t know ME existed, or if they did, thought it was just being a “bit tired or something”.  This was a first for me, a daunting task but I powered through it with the odd sigh and eye roll from youngest child, who gave me some helpful instruction so I could manage to create my first ever video.

Now it’s no professional work I have to admit, but you can only work with the tools you have, mine being a foggy brain and complete lack of tech skills. You will most probably spot the odd typo within the text because I typed up all the slides myself and YES I am patting myself on the back! It was an arduous task, firstly I tried to save time and copy and paste but it was too small to read when in the video and like a numpty I had made some slides portrait and others landscape ~ complete dufus! So that video was rubbish as half the portrait slides were cut off. THEN I redid all the damn slides to make them uniform and landscape, and manually typed up all the text into the little blue boxes which were my chosen frame (blue is the colour for the ME awareness ribbon). Finally, I thought I was done. BUT NO I had somehow managed to put some of the slides in the wrong order ~ doh! So back to editing and finally, finally, I managed to get them into the right order, with the right transition times and static times (I hope), plus tried to blend the loop of the music to fit the video as best I could AND I KNOW the end is a bit ropy ~ but it was the best I could do! THEN and no matter how many times I proof read it, I still somehow managed to miss some errors. BUT having had to re~edit it numerous times and re~upload it 3 times already, I have downed tools because I am spoonless, all used up and some ~ plus I have lost the will to live and may end up throwing my computer on the ground and stamping on it. The call has been put out for chocolate, the only medication left available to me when times are hard like this. The smooth velvety welcome of its embrace, the delicious unctuousness of it, the delight as it slips down my throat and reach out for the next piece. *sigh*

Anyway, where was I? Oh yes…

I hope after all my hard work and befuddlement of my little grey, depleting cells, that you enjoy the final result. I hope that you find it informative but not boring, to have managed to convey to the uninitiated in ME what it is, how it affects us and why we support the charities we do. This was the 3rd awareness video we have uploaded but my very first at creating and making one all by myself.

*waits for applause to die down & nods in acknowledgement back at you*

So after much ado, here it is…

The next video was the first awareness video we shared, it was made 2 years after Tara was diagnosed with ME and was pretty much housebound with the exception of wheel chair jaunts driven by me, now don’t worry I can assure you she was perfectly safe ~ the wheelchair has a seat belt! However, this one was made solely by Tara, in a bid to explain to her peer group why she was no longer at school. It was a stop animation video, which she made on her own over a period of weeks. It shows her feelings about the illness, how she coped and what she felt. It was originally set to a song by Dido which suited it perfectly but we had to change it to a YouTube copyright free option because of the copyright issues on Didos song.

So I give to you Taras 2012 ME Awareness Video…

The second awareness video was a collaborative effort between Tasha and Tara. This was because by that time Tasha had fallen foul of the illness too, following her viral meningitis and scarlet fever which she had made her severely ill. The strain on her immune systems was too great and she developed ME.  Which was a right bugger I can tell you because she had to withdraw from school and a social life as her health nose dived. At one point she was partially paralysed and had a bed cradle as the weight of her bedclothes caused her too much pain and we had to buy exceptionally soft pj’s for her too as her skin felt like it was on fire and burnt.

They thought long and hard about what they wanted to say and how they wanted to convey it. Then they gave a holla out to myself, Dave and Keisha because they needed our hands to help make the signs. Being the fabulous supportive folk we are we obliged and settled down round the dining table, heads bent, hands working with black sharpies and wads of paper ~ it is fair to say we had cramped up hands and were surrounded by debris of crumpled up paper and worn out sharpies by the end of it all.

This is the result of their hard labour, again it’s a different take on how to share with their peers what they were dealing with and how their lives were affected by the illness. They decided not to speak but to simply stand in front of the camera and hold up the signs to share with you their message.

So here it is…

Now aside from creating my first ever video, as if I haven’t banged on enough about it ~ I am walking, along with my game and supportive hubby Dave, with our two Hairy Boys, Taylor and Loki, somewhere around Glastonbury in the first week of May to participate in the now annual “Walk for ME” team event. We have been joining in with this fundraiser ever since it started. Sometimes the whole family, other times just a few of us. Last year I did it alone with my walking stick and many many pit stops to rest. It had me off my feet afterwards with post exertional malaise for days but it was worth it.

I digress ~ so as I was saying, we will be walking somewhere in Glastonbury because that’s where we are going for our Tasha to attend a week long piercing and dermal course. We have booked a cottage almost next door to the building where the course is being held, so will be tootling about the area when Tasha is studying. Having never been there before the route will most likely be totally random, with many a pit stop for me to rest, hobbling along with either my stick or crutches plus wearing my ever faithful ankle and wrist supports. I am pretty sure though that we will wind up in a pub at the end, it is essential to keep your fluids up when partaking in activities such as these. Plus, I am pretty certain, either cake or pie will be involved somehow ~ critical for energy boosting properties, much better than say a banana!

I have decided, you lucky folks, to share with you my fundraising page, just in case you feel so obliged to either share it, or even better share it and donate a wee something. The charity I am fundraising for is working so damn hard on research projects, conferences and reaching out to the medical world on our behalf to update them on all news relating to our illness. Plus, to any of you who do donate, I shall write about our walk, with pictures and everything, to let you know where we ended up going, how far we got and possibly also some food porn for you too ~ what more could you ask for?

Back to the fundraising page, you can access it by clicking on the link here. Also, if you would rather option to donate via text, go on you know you want to, then this wee image shows you how, obviously the amount doesn’t have to be £5, it can be more or less, depending on what you can afford…

text code

*climbs down off soap box*

That’s about it then folks, that’s my awareness campaign for May. Usually, had my health been better, I would have done more, but I can only do my best and so this is it.

Thank you for reading to the end of this blog ~ and watching the videos or clicking the link. Your support is always enormously appreciated and never taken for granted.

‘Til next time, hoping the sun comes out, the days are warm and you enjoy whatever it is you like doing to the max.

giphy3

x~X~x

PWME I Need Your Help

As many of my followers are aware, I suffer with the debilitating illness Myalgic Encephalomyelitis, as do my two youngest daughters. As yet there is no cure or specific treatment for this condition. Sufferers face a myriad of symptoms which affect every aspect of our day to day life. We have to choose how we spend our limited energy on a daily basis and this leads to often having to make compromises we would rather not have to make.

Over the years I have tried various alternative/complementary therapies to try to  relieve the severity of the girls symptoms, as well as my own. I have often wished that I had access to a database of therapies, tried and tested by other sufferers, with honest reviews regarding cost, accessibility and whether or not any benefit was felt, if so for how long after each session and whether it was sustainable or not.

My hope would be that if compiled information regarding these therapies was analysed and specific therapies were found to be beneficial in relieving symptoms that sufferers could be either offered them on the NHS or given discount vouchers for them. As sadly, more often or not, they don’t come cheap and so end up being inaccessible for many of us. Even better would be for a service to become available providing discounted/or free therapies to sufferers within their own home, therefore removing the hugely energy draining travel from the equation.

As will all things, it has to be fired up from one study, which hopefully will then be picked up on and then snowball in order to make this even remotely possible. For this we need the support and input from the ME community. Without your input the studies can’t get off the ground and nothing will happen.

I have a lovely friend, Fiona, who would very much like to do something for us as she is incredibly sympathetic to our cause. She understands, from personal relationships with friends suffering from ME/CFS, exactly how we suffer and how many barriers we face from health care professionals and mental health “experts” who are slow to coming round to increasing medical evidence that ME/CFS is a serious, debilitating, neurological physical illness and most definitely not the “all in your mind” illness, as previously purported.

Fiona needs our help, so I am calling out to all people with ME/CFS, please could you take a few moments of your time to complete her questionnaire relating to your experiences with alternative/complementary therapies.

I have asked Fiona to explain what she needs in her own words, she says…

“Hi, my name is Fiona Cox and I am studying for a Health Psychology Masters degree at the University of the West of England. I am also in my final year of a three year Shiatsu course.

For my health psychology dissertation I am conducting research into the use of complementary/alternative therapies/medicine (CAM) by people with ME/CFS.

I have been interested in this condition since the 80’s when a friend at school became ill with it, back then it was known by the unfortunate tag of “Yuppy Flu”. It was very clear to me that she clearly had something very wrong with her which definitely was not a psychological problem or due to stress, as was thought at the time.

I have encountered a number of people who have become ill with this condition over the years and I am always angry on their behalf when they tell me their experiences of struggling to be believed and diagnosed.

I understand how difficult this condition is to be diagnosed, particularly with half of GPs still not recognising it as a real condition. Research indicates that as many as 80% of people with ME/CFS will try at least one CAM. I am interested in how people choose their treatments, what their expectations are and if they found them to be useful or not. I am looking for any common themes across the research data which may be useful when looking at ways to manage and improve people’s lives.

My research involves completion of an on-line survey which doesn’t have to be done all at the same time, as I appreciate that this may be quite tiring. I will also conduct a few face-to-face interviews to explore this subject in greater depth. You are invited to volunteer for this at the end of the survey but it is optional. Interviews can be done by Skype so you don’t have to leave home.

Please take this opportunity to share your experiences – it is completely confidential. The link to the survey is…

goo.gl/Iw6qvW.

Thank you for your time, Fiona”

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So folks, what do you say, are you in? Surely any person wanting to dedicate themselves and their studies to helping us deserves our full support. I for one am in and have completed the survey but Fiona needs many more of us to do this for her too. It is a very user friendly questionnaire which takes into consideration our energy limitations and so has been designed with that in mind for it to be completed in stages, as energy allows.

I hope that once Fiona has completed her research to be able to share with you her results. I am sure it will be a fascinating insight into what therapies could potentially prove beneficial For us in easing certain symptoms we may experience.

Thank you, lovely people, for reading this blog and hopefully participating in answering the questionnaire and helping Fiona with her research on our behalf and for Fiona in dedicating her studies trying to find ways to help us relieve our symptoms.

IMG_7052

x~X~x

Chronic Illness Awareness Challenge

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I have been given the luxury of time, because of my chronic health issues, to think over the past few weeks about life and death. We take so much for granted that we can easily forget how fortunate we are. We only have the one shot at this life and throughout our existence we have to make choices on how we use and live it. Since becoming a parent I am advocate to my children and will fight with everything I have to keep them safe as much as is humanly possible. I know that I cannot control everything that happens but what I can do is make a choice on how I respond.

We have lost many loved ones over the years and recently we lost our baby girl Skyla Minx, our five year old border terrier bitch. Now to those who aren’t pet lovers she was NOT “just a dog”, she was family. We were blessed to have had five fabulously happy years with Skyla, she was Tara’s dog and spent many hours snuggled up in bed cuddling Tara ~ she helped her cope with her chronic illness and was her best friend. So not only did we lose a cherished member of our family, Tara also lost her best friend. This has affected us all enormously and also our two remaining dogs, Loki and Taylor, who are grieving for a lost member of their pack. In grieving for Skyla I started thinking about the passing of my mum and other family members. Loss comes in many forms, whether the passing of a relative, friend or pet, or the loss of health, choice and freedom.

Whilst musing about different types of loss I came across this chronic illness awareness challenge and thought it was a good way to share my story and raise awareness at the same time. So here it is…

My Response to the Chronic Illness Awareness Challenge.

Question 1: Introduce yourself, what illness/illnesses do you have and how long have you had it/them?
Okay so introducing myself for those of you who know me my given name is Tanya but  I also answer to Tonks or Crazy Purple Mama. I’m a middle aged married woman and mum to 3 adult daughters. As for illnesses, I have a few, so will simply list them;
Temporomandibulrar Joint Syndrome (TMJ) ~ diagnosed in my teens.
Chronic Depression ~ Suffered since late teens, lowest point was when I was 18 and living alone and attempted suicide with pill overdose. Although experienced many low points over the years and needed intervention via therapy and medication on several occasions.
Loss of bladder tone and loss of pelvic floor function, diagnosed during second pregnancy requiring a special belt to be worn during my second and third pregnancies and following them had internal electric shock probe to try and tone up bladder and damaged pelvic floor without success ~ so now rely on Tena Lady and always search for a nearby loo when go out, because wetting yourself in public areas is not desirable.
Myalgic Encephalomyelitis ~ been ill with this for years but didn’t get official diagnosis until January 2016.
Diverticulitis ~ diagnosed July 2016
Hypermobility Ehlers Danlos Syndrome ~ Diagnosed February 2017.

Question 2: How have these illnesses affected your life?
The TMJ is easy to live with so long as I remember to wear my mouth guard at night to hold my jaw in the correct position and stop jaw clenching too. I notify my dentist so she gives me rests and short jaw massage during any treatments. Also know when it locks to give it time and eat soft foods.
Having chronic depression has been difficult as the lows are deep pits of misery which take some clawing and climbing to get out of. I have found coping techniques as I gave grown older and can recognize when I need to seek outside help, it has made me more aware of mental health in general and I feel passionate about talking about it and fighting to remove the stigma around it. It worries me how many suicides and attempted suicides there are. I can relate to being in such a black hole and am eternally thankful that my attempt was unsuccessful, at that point in my life I thought suicide was the only answer. We need to talk about mental health and ways to help sufferers giving them information and support to show that help is available. Sadly due to job cuts and loss of funding accessing mental health care and support usually results in a very long wait on a list to be seen which isn’t really acceptable when help is needed immediately. You have to risk your life or be sectioned it would seem to get bumped up the list.
The bladder and pelvic floor issue is just inconvenient ~ long journeys aren’t pleasant as either I totally dehydrate myself before traveling OR drink as normal resulting in needing numerous toilet stops and the risk of having an accident if toilets can’t be found as I can’t hold the urge for long at all. So when I gave to go there is only a short window between needing to go and going! I can’t skip, trampoline or do anything vigorous without leaking so Tena Lady is my constant companion.
Myalgic Encephalomyelitis has turned my life upside down. I find concentrating difficult and so reading is difficult resulting in having to read and reread the same thing over and over. I have awful fatigue and cognitive issues along with never ending pain so am mostly housebound and rarely get out and if I do it comes with consequences. I have recently had a tooth extracted after prolonged attempts to save it with fillings and root canals, once extracted there seemed no cause for the pain it was giving me ~ apparently having ME and/or EDS can cause hypersensitivity. All I know is that now the tooth has gone the pain has gone too.
The Hypermobility EDS has only just been diagnosed and I am currently waiting for my referral to see a rheumatologist to come through. The knock on effect from this diagnosis is that I now know why I experienced past medical issues, it’s because my internal body as well external is affected. My biggest issue is constant and debilitating joint pain, making mobility exceptionally wearing, exhausting and difficult. I have also discovered that the gum recession is due to EDS too and so have made my dentist aware.

Question 3: How did you get a diagnosis?
My TMJ was diagnosed by both dentist and GP.
Depression by GP and mental health therapist.
Bladder and pelvic issues diagnosed by a Consultant in Gynaecology with special interest in pelvic floor surgery (prolapse), urogynaecology (female urinary incontinence) and menopause. He repaired a double prolapse for me and referred me for the pelvic floor/bladder electric shock therapy to try and help tone them to help relieve symptoms.
Myalgic Encephalomyelitis was eventually picked up after many years of being bounced from GP to GP who all said I was ill from stress and depression, yet year on year my health declined. It was only when a new GP joined the practice, reviewed my notes and said those magic three words to me when I told her I thought more was going on than stress and depression ~ those words were “I believe you”. She rang the ME Clinic to ask what she had to do before they would accept a referral to which they replied with a ream of blood tests to be taken to literally rule out everything that could be tested for. When all bloods came back as normal I was then accepted for referral to the ME Clinic at our local hospital. Once there I was given a initial (very long) thorough appointment going over my medical history and also incorporating a physical exam. My husband was with me as my cognitive function was so poor and I struggled to word find and construct sentences (my poor hubby had initially thought, and confided in the GP, that I had the onset of dementia). Using the Canadian Consensus criteria my official diagnosis was then given.
My Hypermobility EDS was also diagnosed by my ME clinic after more physical exams and thorough medical history which linked previously unrelated health events along with the pain to the specific Hypermobility EDS. It is now thought that my TMJ, double prolapse, bladder issues pelvic floor issues and diverticulitis/ongoing gut problems, poor healing and excessive bleeding, receding gums, plus easy bruising are all part and parcel of the EDS. I am waiting to see a rheumatologist for help gaining some control over the pain and to access specific physio and OT assistance too.

Question 4: How have your friends and family reacted to it?
I have few friends I see physically as most friendships are maintained over the internet.my close family aren’t surprised and it all ties together why I have been struggling. I am exceptionally blessed to have a insanely close, supportive and accepting family.

Question 5: How does being chronically ill make you feel?
The biggest response to being chronically ill is losing control. My body dictates what I can or cannot do each day. Some days I literally can’t do anything at all, I get hugely frustrated, sometimes tearful and other times angry.

Question 6: If you could have told yourself something when you first remember these symptoms arising what would you have said?
It’s not your fault! Sometimes things happen beyond your control and it doesn’t mean you deserve it somehow. Don’t beat yourself up, don’t try to force your way through it because all you are doing is making yourself worse. It will take time but you will be believed eventually. Life can still be fulfilling and rewarding, you will learn to see life from a completely different perspective, life won’t be the same but that’s not necessarily a bad thing.

Question 7: What was the biggest realisation you have had?
Asking for help isn’t a personal fail ~ I am stubborn and proud, I loathe having to accept defeat and asking for help. It used to make me feel weak, a failure, a burden. Now I realise that as a family we are a team and we all help each other, that it’s only human to need help sometimes. I live a more simple life, my expectations have changed and my life has become richer for it ~ something I didn’t expect. I now celebrate and revel in small achievements and the slower pace of life. Each “good day” health wise is grabbed with both hands and enjoyed. My outlook has altered considerably and I am far kinder to myself, our family has grown so close over the past few testing years instead of pushing us apart. Life can be a cruel bastard but not every day is a bad or sad one ~ it’s how you approach it that makes the difference.

Question 8: Where do you see yourself in 5 years time?
I have no clue, so much has happened over the past 5 years that could never have been anticipated, so I am pretty sure the next 5 will do the same. I prefer instead to live life simply day by day, trying not to look to far into the future. Whatever occurs will be dealt with as it presents itself.

Question 9: Have you ever tried any alternative therapies, if so what and did they work?
I have had acupuncture which helped a little but I found the treatments excruciatingly painful and I bruised where the needles were inserted, reflexology and herbal tinctures all to no avail. However I am trialling 8% CBD oil for pain and it’s working to some extent.

Question 10: What little things make your life easier?
Wearing splints helps support my joints and helps mobility.
I swapped a manual car for automatic which has made a massive difference and enables me to continue driving.
I also have a steering wheel cover which makes it thicker and therefore easier for me to grip when driving.
Hats! Essential for bad hair days, and dry shampoo, wet wipes, shower stool for easier personal hygiene.
Legging, jumpers, hoodies, trainers, my worn in DM’s make dressing and resting easier and more comfortable.
Walking stick/crutches help maintain my balance and mobility.
Blue Badge ~ means parking closer and less walking which in turn gives me more freedom.
Planning ahead ~ if going out then plan to rest before and after. If a big social event then book a hotel so I can go to bed whilst hubby can stay partying.
Talking to people so they know my limits beforehand, so if I have to leave or need to cancel they half expect it and don’t feel I have been rude.

Question 11: Why do you believe you have this illness, bad luck, a higher power or something else?
I initially felt angry, the why me, it’s not fair mentality but then realised that it is what it is. I still have a good life, it’s just different from how it used to be. I don’t think it’s bad luck or a higher power but just life. Everyone has demons to battle, it’s not always visible or apparent to others but I doubt many people get through life unscathed.

Question 12: Briefly explain to a healthy person what it is like to live with this/these illness/illnesses?
Being chronically ill with an invisible illness is difficult because it’s not apparent to others. It’s frustrating and sometimes humiliating trying to talk to people and explain what I have when these illnesses aren’t fully supported by many doctors and people assume I’m lazy or faking. It takes away many choices, your body and symptoms dictate what you can do and planning ahead is impossible ~ but if you do you end up cancelling more often than not on the day. Having people glare at me and make snide remarks when I park in a disabled bay ~ I now have “not all disabilities are visible” stickers in the front and back windows of my car. I miss so much especially long walks with my dogs and doing things with the family – everything is limited and life is a compromise.

Question 13: Has your physical illness had any effect on your mental health, explain?
I already have chronic depression which is always there, my black dog walking to heel mostly although physical set backs and flares can cause my black dog to break away and run amok. I am hugely emotional and feel great highs and deep lows but am learning year on year to accept, acknowledge and cope and know when it’s time to call in the cavalry when it’s too much to deal with on my own.

Day 14: Give 5 things you are grateful for?
My life
My husband, daughters and dogs
Having a roof over my head
The internet for keeping me connected
My GP for saying “I believe you” and accessing help for me.

Question 15: What would you say to people newly diagnosed with this/these illness/illnesses?
Don’t allow yourself to be fobbed off, keep searching until you find a health practitioner who understands and supports you. Utilise the Facebook support groups, they have been a lifeline for me providing me with support, information and strong virtual friendships. Being part of a community whether a local support group or online has been a vital for me in feeling less alone. Also if a treatment that is prescribed for feel feels wrong for you don’t be afraid to refuse it. Research your options and learn as much as you can to stay informed about your illness. You are not alone!

Question 16: What is your favourite inspirational quote?
“Never be bullied into silence. Never allow yourself to be made a victim. Accept no one’s definition of your life; define yourself.” Harvey Fierstein

Question 17: How would things be different if you weren’t ill?
I would be more present in life.

Question 18: Do you think you have become a better person through being ill. Explain?
Yes, it’s made me sit back and appreciate all the small things that previously I took for granted. You can live a full life with a chronic illness, it’s just a different one to the one you imagined. People show their true worth and it has shown me who the genuine people are and those who are toxic. I now know far more about mental illnesses and chronic illnesses and have empathy for those who suffer. I think it has opened my eyes to a world previously unseen and made me appreciate life and the people around me more.

Question 19: How do you feel about the future?
I don’t look into the future, life has shown me that nothing is certain, instead I prefer to seize the day when I can and allow myself to do nothing when I need to. Tell those around me how I feel about them so that I never have to say I had regrets for not doing so. Life can end suddenly without warning ~ I intend to make the most of every second.

Question 20: Have you met anyone with the same illness. Did it help?
In therapy rehab groups and online yes, it helps to not feel alone and bounce ideas off each other. Also valuable life hacks and coping techniques are shared as well as friendship with people who understand and laughter.

Question 21: What networks or websites have you used for support or information about your illness/illnesses?
http://www.sane.org.uk/
http://www.sane.org.uk/what_we_do/bdt (black dog tribe)
http://www.investinme.org/
http://ldifme.org/
https://www.ehlers-danlos.org/
Plus closed Facebook groups have been a crucial lifeline

Question 22: How do you feel you have been treated by the medical system? Explain.
It has taken a long time to get diagnosed and to be properly heard, however, once diagnosed the people involved have been incredibly supportive and helpful. I think, sadly, it’s the luck of the draw as some people are not listened to at all. Awareness is needed about these conditions as there is so much conflicting information going on with many doctors not being up to speed on developments and research. There is still much to do and work of charities pushing biomedical research is necessary and fundraising essential to ensure these are still ongoing.

Question 23: What do you say to yourself when you need a pep talk?
It could be worse. Look around you, you have an amazing family and great dogs. It’s not about what you can’t do but what you can do ~ don’t give in to negativity.

Question 24: How have you managed to juggle your social life through your illness?
I don’t, my social life is timeout with family and very rare social get together outside of that. Going out in groups or socialising outside of my safety net takes huge amounts of energy both physically and mentally.

Question 25: Name 5 activities you have managed to pursue while being ill and 5 activities you have done that you wouldn’t have pursued if you hadn’t become ill?
I can only think of two which just happen to fit in both categories;
Photography ~ I signed up to a Open University photography course and passed despite rarely leaving the house. I mostly utilised items inside the home and in the garden to fulfil my assignments. I wouldn’t have had the time to pursue this hobby if not been ill although it’s only possible to do on good days.
Joined online groups to socialise, before becoming ill I would socialise in the real world but I find I sometimes need to step back as interacting even virtually can become overwhelming.

Question 26: What impact had this had on your friends, family, partner etc.?
We have become more reclusive but my husband can and does, without any animosity on either side, go out socialising alone. Our family has become so much closer throughout our difficulties and laughter is a huge part of our life. They know where I am and that I am limited but it doesn’t have a negative impact as such because we all tend to look on the bright side and not dwell on the bad stuff too much. Although now and then it needs facing and discussing as events or need arises.

Question 27: What’s the most helpful advice you have had?
That it’s not my fault, I’m not alone in this and to listen to my body and follow my gut instinct. It’s okay to say no to treatments that don’t sit well with me, what works for one person may not work for another. To research my conditions as much as possible so that I am aware of any new breakthroughs or treatment advice, ironically I end up (as do many sufferers) educating health care professionals who don’t know what my conditions are.

Question 28: Name 5 things you have achieved despite your illness?
Passing my photography Open University course.
Being active, although in a different way, in my family life, supporting my husband and children in whatever ways I can.
Socialising and meeting people, all be it virtually.
Blogging ~ a form of therapy and a way to connect.
My sense of humour, I may get knocked down but I’ll always fight to get back up again ~ humour makes life easier to face and deal with.

Question 29: What has helped you cope with the stress of this lifestyle?
The support, love and understanding of my nearest and dearest. They put up with my mishaps due to cognitive dysfunction, keep me laughing, keep my life in perspective. Also my dogs, never underestimate the power of pet therapy. Also, very importantly, finally accepting myself, acknowledging who I am and learning to love that person. Letting the negative people go without stressing about it and not worrying if people don’t like me.

Question 30: And finally…starting at your toes and working up to your head, name each part of your body and how your illness has affected it, followed by something you like about that part of your body?
Oh blimey..That would fill a book, instead I tell you that all my body is affected by my conditions, internally and externally. I suffer aches, pains, swellings, bruising, infections, slow healing, excessive bleeding, bladder issues, no pelvic floor support, gut and bowel issues, skin irritations and allergies, dental issues, cognitive dysfunction, mobility issues and more ~ YET I still love my body, it’s baggy saggy parts, the scars and stretch marks, the swollen and bruised parts and my batty old brain because without them I wouldn’t be here and they carry with them my life story.

live-life-to-the-fullest

x~X~x

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