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.

16

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 ~

steps

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.

note

x~X~x

Choices

I woke up this morning, as I always do, by opening my eyes to see which dog is shuffling and prodding me to be fed. Usually I then follow the dogs downstairs, they are very good they wait for me intermittently to catch up with them. Ankle pain and stiffness makes my journey downstairs one of silent curse words and hobbling.  I open the door for them to go outside to find their “toilet” spots whilst I sort out their breakfast.

They eat whilst I gorm before returning outside to do their number 2’s. Then as they come in and shoot back upstairs to snuggle in my vacated indentation on the bed, I close and lock the door. I bear crawl upstairs (it is the easiest and less painful way to do the climb) and hobble back to bed. There ensues a few minutes of trying to squeeze myself back into “my” indentation whilst the dogs try to prevent me from doing just that. Usually it results in a compromise of us all getting half and half.

I usually then fall asleep again for a few more hours before I finally get up.

I look across the bed and Dave is gone.

When I come downstairs the second time Dave is usually up and about, drinking his second or possibly third coffee. Ritualistically he always asks how I am feeling, I always reply that I feel awful and don’t understand why. He offers up platitudes and tells me to sit down whilst he goes and makes me a coffee and brings it to me along with my medication. I can then be in this semi~awake state for a further few hours before again climbing the stair mountain to get washed and dressed.

Today was different, Dave was still very kind and understanding but this time instead of the usual platitudes he said “I don’t understand why you don’t get why you feel so poorly. You have several chronic illnesses which are always going to make you feel unwell.” We then settled to our usual routine but this time my brain was sort of churning through the fog enveloped around it.
a11e80212790dc49c1aeedd53350f68d--one-day-potsI know I have these illnesses, I thought I had accepted it but it would seem I am still in denial for the most part.

I have purchased aids to support myself, compression stockings, wrist and ankle braces, smart crutches, blue badge and take medication, so I must acknowledge and accept my illness a fair bit surely?

Sitting quietly, no sounds around me other than the rain falling and dogs snoring I allow myself to ponder.

I am fighting accepting my illnesses, I don’t want to be “sick” ~ to be fair who does? I am so frustrated by my body lassoing me and holding me captive. I want to dance, do zumba, to trek, go see live bands, to go out with the girls, walk the dogs, clean my own house!

So, fellow spoonies, how on earth to you reconcile yourself to the new limited edition of you? Do you keep pushing the boundaries trying to break through them too? Is it human nature to not accept a state of being and to want to stretch it?

I so want to do more and be more. I am currently feeling angry at my own body and how it is behaving. I also feel bad about doing that too ~ so far my body has been exceptionally accommodating. In my youth I abused it with alcohol and partying, I put it through pregnancies in quick succession, I just took it for granted that it would always do for me what I asked.

It seems now it’s fighting back, it’s dug it’s heels in and giving me resistance to everything I ask of it. Not only that, my brain is playing games too ~ releasing my black dog for unleashed romps, forgetting words or replacing them with wrong ones. It refuses to allow any length of concentration on anything and often forgets things almost immediately. I am trying to sudoku it repeatedly to force it to cooperate, allegedly games like that help brain function.

I take prescription medication for depression & pain, plus different supplements from over the counter (checking first with pharmacist to ensure they don’t react adversely to prescription medication) which are meant to help with energy, bowel health plus my vitamin D.

So, body of mine, I apologise, for abusing you and taking you for granted in the past. I acknowledge now all the fabulous things you have done and still do for me.

I suppose I have to now work towards helping my brain and body instead of fighting them. To accept *gulp* the new reality and hope that in the future things may improve. I have been told not to expect it but it may happen. I have been told (by doctors) to adjust and accept what I can do, that it could be worse, that I am lucky to be sick now and not in my youth.

I look hard at what I have and yes I am more than exceptionally lucky.

I have choices to make, to decide what to prioritise and what to pack away for a tomorrow that may not come, but it’s wrapped in a layer of hope, so you never know.

For my girls, I will do what I can, they didn’t ask for their challenges anymore than I asked for mine. Together we will face them and strategise the heck out of what we can do around them.

For my husband, you do so much for me I cannot thank you enough, despite fighting every day against the side effects of your heart medications.

I am lucky, more than I deserve and more than I ever thought possible.

So, from this moment on I am going to try and make the right choices, to learn to accept the new version of me and to make life as easy for those around me and learn to be kind to myself too.

However, I cannot commit to not releasing the odd expletive. I cannot allow this embuggerance to control me, instead I shall take back the reins and control it’s power over me. I shall choose to pace, to self care, to acknowledge the obstacles and finds ways around them.

Quite simply, I won’t quit!

x~X~x

Faith?

Faith ~ a small 5 letter word but it can mean so many different things to so many different people.

Faith
Noun: faith
1. Complete trust or confidence in someone or something.
“This restores one’s faith in politicians”
Synonyms: trust, belief, confidence, conviction, credence, reliance, dependence; More
Antonyms: mistrust
2. Strong belief in the doctrines of a religion, based on spiritual conviction rather than proof.
“Bereaved people who have shown supreme faith”
Synonyms: religion, church, sect, denomination, persuasion, religious persuasion, religious belief, belief, code of belief, ideology, creed, teaching, dogma, doctrine
“She gave her life for her faith”
A particular religion.
Plural noun: faiths
“The Christian faith”
A strongly held belief.
“Men with strong political faiths”
Exclamation IRISH
Exclamation: faith
1. Said to express surprise or emphasis.
“Faith, I was shown the door myself and came home”
Origin: Middle English: from Old French feid, from Latin fides

We all have faith in one thing or another ~ but what most people seem to think of first is faith equals religion. I’m not about to bash religion as such, but I’m not going to promote it either. Everyone has a right to their own belief, in whatever form that my take.

It was a facebook post by my husband that prompted me to write this blog, it was..
“”What’s on your mind, Dave?” Well Facebook, thank you for asking. So, I’m thinking, we currently have floods, hurricanes, wild fires, genocide, famine, racism, war and terrorism in the World, and possibly on the brink of a nuclear war. Therefore, if there is a God, he’s a c**t!”

Quite the statement don’t you think?

It really did make me think and hand on heart, whilst I don’t like using the “c” word as for some reason it makes me uncomfortable, I felt this status was something worth discussing.

I used to class myself as being a follower of the Church of England. I wasn’t a devout follower by any means but would put it down as my faith on all documents without a second thought as to why. I was confirmed into the church in my early teens, married in church and baptised all my daughters in the church too. I even went so far as to putting them into Sunday school when they were little because I liked the young vicar who ran it. He played guitar and didn’t make the sessions too God heavy, instead just focussing on small lessons about what was the right way to behave and what was deemed to be the wrong way.

It wasn’t until my daughters starting growing that the internal questions began. “If” there was a God then why…? So many questions with no answers other than it is impossible for a loving, caring entity to create a world where there is so much cruelty, wickedness, tragedy and despair. I realised, for me anyway, that to believe in a God you had to believe “He” or possibly “She” created the world and to not believe in the creation as explained by science, or dinosaurs for that matter. *Those who know me well will understand the dinosaur reference, which I will not go into here.

My faith is, I realised, in humanity, not in a deity.

I came across an article here where it talks about religion and science.

“In the beginning, God created heaven and Earth, and he saw that it was good.” Book of Genesis, the dramatic opener of the Old Testament.

By the final Book of Revelation in the New Testament, the Earth suffers “Seven Plagues” — from disease to “intense heat” and drought, then finally a shower of deadly hailstones.

And then comes the Apocalypse, the final judgment of man and destruction of the world by fire.”

In this article there is a quote by someone who believes in God who feels the changes are because of the sins of man“If you carefully look at events there are certain catastrophes,” said Han. “But God is in control and it’s not God’s fault, it’s our fault because we sinned against God.”

Another article I found interesting talks about our historical links to religion and meteorology called Weather and Ancient Religion, Greek Mythology

“Weather is a crucial part of our lives and always has been. Destructive weather can mean losses of property and life. The right weather conditions grow crops. If it’s favorable or unfavorable weather, it still impacts our lives on a daily basis. We know more about meteorology now than we did 2,000-3,000 years ago, but there is much about the forces of nature that are still as mysterious and awe-inspiring to us today as it was then.”

Whilst I don’t believe in God I do believe that it is the sins of man that are to blame for much of climate change and the disasters we are seeing. We chop down the forests, pollute the seas, land and air with our rubbish, chemicals and toxins.

The committee on climate change say..

“Geological records stretching back millions of years indicate a number of large variations in Earth’s past climate. These have been caused by many natural factors, including changes in the sun, volcanoes, Earth’s orbit and CO2 levels.” However, comprehensive assessment by scientists shows that it is extremely likely that human activity has been the dominant cause of warming since the mid-20th Century.”

So, to “floods, hurricanes, wild fires, famine” all of these are said to be caused by alleged “Acts of God” or nature depending on belief. I say that it is neither, it is down to our irresponsible behaviour in our treatment of our planet. Our throwaway culture, act now worry later mindset and blind consumerism has caused the planet to change. We buy and use without worrying about how products are produced, where components come from and where they go when we have finished with them. We need to be accountable for all of our actions in every aspect of our lives and look into ways we can improve our lifestyles to create as small an impact as possible on the planet. To try and undo the damage of the past and work towards caring for the planet that sustains us before it’s too late.

Whatever you believe it’s chilling; take a look at the list of natural disasters on Wikipedia here.

I believe that guilt for these disasters should lay firmly at the feet of mankind. It is our arrogance and complete disregard for the consequences of our actions in the past and in some cases present, that have led us to where we are now.

We need to be united worldwide in fighting to correct past mistakes on a clock that isn’t ticking in our favour.  This article in the Guardian from June this year makes for terrifying reading.

“The bottom line: Whether it’s faster than average warming, more vulnerable than average populations, or more severe than average drought, floods and storms, it’s clear that some places are being hit harder than others by Earth’s altered climate, and so face extra urgency when it comes to adapting to a new reality. But the bottom line is that climate hotspots intersect, and nowhere will we escape the changes taking place. What happens in the Amazon affects West Africa; the North American growing season may depend on the melting of Arctic ice; flooding in Asian cities affected by warming on the high Tibetan plateau. And urban areas ultimately depend on the countryside. We’re all in a hot spot now.”

Regarding genocide..

Genocide
noun
The deliberate killing of a large group of people, especially those of a particular ethnic, national, racial, or religious group.
“a campaign of genocide”
synonyms: racial killing, massacre, wholesale slaughter, mass slaughter, wholesale killing, indiscriminate killing; mass murder, mass homicide, mass destruction, annihilation, extermination, elimination, liquidation, eradication, decimation, butchery, bloodbath, bloodletting; pogrom, ethnic cleansing, holocaust, Shoah; literary slaying; rarebattue, hecatomb
“the killing of native Americans was the biggest genocide in world history”

The hybrid word “genocide” is a combination of the Greek word génos (“race, people”) and the Latin suffix -cide (“act of killing”)

From my understanding many of the worlds worst crimes against humanity have been in the name of religion.

This article Religion and Genocide, Dr. Ellen Kennedy is very interesting, it talks about genocide and religion and that it is more complicated that it first seems.

“The Nazis exterminated 6 million Jews because of religion; Orthodox Serbs, Catholic Croats, and Bosnian Muslims slaughtered each other because of religion: the Sudanese Muslim government killed more than 2 million South Sudanese Christians because of religion.”

Yes, religion may be a contributing factor but other more complicated reasons could be in play too..

“In virtually every case of genocide, a ruling elite is in a precarious position with a fragile economy and a volatile political situation. The leaders are desperate to maintain control under conditions that could quickly devolve into chaos.”

Many people see religion as the ultimate cause of genocide. It is however more difficult to solve or prevent due to a myriad of factors that come into play prior to such events. She concludes her piece with this statement…

“Religion, our guide to ethics and justice, can divide and ‘other’ a group to gain power and control through genocide.”

The “World Without Genocide” website say protect, prevent, prosecute, remember. What they want to achieve and their aim is. “to protect innocent people around the world; prevent genocide by combating racism and prejudice; advocate for the prosecution of perpetrators; and remember those whose lives and cultures have been destroyed by violence.”

Moving onto “racism, war and terrorism”. I read a title to a written piece that said “The only difference between a Christian gunman and a Muslim terrorist is racism”. At the end of the day, to my mind at least, all wars are started by a difference of opinion often based on religion. It doesn’t matter which camp you are in ~ the person behind the gun is a human being fuelled by the belief that their way of thinking is the correct one which means the opposing party is the enemy.  A difference of opinion becomes so clouded by belief that peace is not possible and wars erupt. It is NEVER okay to kill in the name of religion, or to justify a war on the basis of religious differences.

I am a pacifist, I do not believe in war, of killing in the name of peace ~ how can that ever work?

I stress to underline that I do not believe all people who have faith in their chosen deity to be terrorists or racist.

It is the actions of a few that mar the image of the many. I am saddened that Muslims, just for example, are given such a hard time for their faith. The terrorists that act in their name twist the words of their religious text to suit their fanaticism and that is not how the vast majority of peaceful Muslims interpret the very same text.

In fact you will see the Muslim community often standing shoulder to shoulder with victims of terror attacks, which incidentally they are also victims of. They condemn the act of terrorist who do these acts of violence just as much as we do.

We are all born the same, no matter where we are in the world. From the moment we take our first breath we are being conditioned by our environment ~ geographically and emotionally, privilege or lack of it and how we are nurtured. These factors will then have an impact on how we grow and develop. Our inbuilt beliefs end up being based on those of our family, religion, schools, friends and experiences.

Terrorists aren’t born they are made, the same for racists.

We need to work much harder to eliminate the influences in society which enable these behaviours and prevent radicalisation. To work to counter them and to be mindful of those who are being persecuted. To step up whenever we see wrongdoing before us and not to stay silently on the sidelines waiting for someone else to step up instead.

We need to work to avoid wars and bring about peaceful solutions ~ life is precious and should not be measured as more or less because of misconceived ideas about race or religion.

Finally, I go to being “possibly on the brink of a nuclear war.” I have to say I am concerned too.

I am deeply against everything nuclear, I do not like nuclear energy at all and would much rather move towards solar, wind and water powered energy ~ but that is for another blog.

Nuclear weapons, to my mind, are terrifying. We are told we need to have nuclear weapons to show other countries not to mess with us. Other countries have nuclear weapons to show that they can retaliate if necessary with like for like. The devastation these weapons can wreak is mind numbingly terrifying.

This brings me to Donald Trump for USA versus Kim Jong Un for North Korea. They are both not (to my mind anyway) of sane mind. They make terrifying statements and decisions, resulting in a battle between them of my nuclear arsenal is considerably bigger than yours pissing contest.

Reading I’m a Nuclear Weapons Expert. Trump’s Presidency Is My Personal Nightmare  is stomach lurching. I don’t really know how we extract ourselves from the whole nuclear weapon issue now. As more countries stockpile them it will be harder to remove them, to destroy them all forever because people now know how to make them and that knowledge can’t be unlearnt. Also, you have to have trust ~ to trust that a country has destroyed them all when you can never be 100% sure that they have actually done so.

The article closes with a comment which is frightening…

“But you know that, sooner or later, our luck will run out — that we must eliminate nuclear weapons before they eliminate us. If the sight of Trump or Kim with the bomb disturbs you, then you believe in nuclear disarmament. That, or you believe in shovels. Lots and lots of shovels.”

We are in the hands of others, we cannot as individuals change it, instead we can only hope, lobby, protest and fight to have these weapons destroyed and hope that it happens before it is too late.

Finally, “therefore, if there is a God, he’s a c**t!” Hmm ~ I don’t like the “c” word but yes, if such a deity existed then what sort of deity is it, I don’t say “he” because if you are going to believe in something that has no proof of existence why not have God as a “she”? How could a “God” see all that is going on and allow it? That is just my own personal opinion and not one I expect everyone to agree with, but that’s the beauty of freedom of speech.

If you are interested in hearing Stephen Fry talking about his thoughts on religion, which made me nod in agreement you can watch it here. If you don’t then please just scroll past.

So going back to the title of my blog and “faith”. I do have faith, I have faith in humankind, the very many wonderful people on this planet who are magnificent in the way they live and treat others. Those who dedicate themselves to being the best they can be, to support those around them and who do small acts of kindness in whatever ways possible.

I am not anti religion I understand that it is a belief that can give followers peace, strength, comfort and support. Many local churches do awesome work supporting homeless and reaching out to help those in need. I will go so far as donating and supporting their work when I can ~ when I know it is being used locally to help local communities.

It is the greedy religious leaders syphoning money off their followers, growing fat and lining their pockets on the back of others that I have an issue with. The pointing of fingers to those who don’t have the same belief and victimising them, waging wars against them, belittling them. To the people who refuse to listen and understand those who choose not to believe in a deity. To those who deride those of us who follow the lines of science and evolution.

Everyone is entitled to their own belief so long as it doesn’t harm others. I have seen so called religious people be horribly cruel and unkind to those who don’t hold the same principles. Surely the very core of any religious belief is to be kind and care for others?

If I had to categorise myself as anything I suppose it would be as a humanist ~ but I would rather not say even that. The humanist following is almost like a non religious religion, which sits a little uncomfortably with me, although I do follow it’s principles which are defined as being..

“Humanism is a philosophical and ethical stance that emphasizes the value and agency of human beings, individually and collectively, and generally prefers critical thinking and evidence (rationalism and empiricism) over acceptance of dogma or superstition.”

In conclusion, when it comes to faith I feel that whoever you are and whatever you believe you are okay in my book so long as you are kind and considerate to others. To stand up alongside and support those who are being persecuted to fight against their persecutors. To join forces with others to promote peace, to care for our planet, to be mindful of everything you do. Your decision, your actions, everything you do in life has an impact.

You may not realise your worth, the footprints you leave behind caused by the direction you take. Your words and actions can impact on so much without you actively realising the good or conversely the damage you have caused.  It could be how your children grow up, the values they hold, your impact on the environment, a change in a persons character, the productivity and/or confidence of a co~worker, how your relationship grows or dies with neighbours, friends and family.

All we can be is our best, to work towards changing bad habits and being open towards listening and being open towards others. No~one person is perfect, all of us are flawed but it doesn’t mean we have to give up because we are. There is and always will be room for improvement.

Even though I am not of a religious faith I embrace those in my life who are, it doesn’t make one of us better or worse than another, just different. It is simply through luck ~ good or bad,  that we may or may not be in the path of the awful disasters, wars and atrocities that are ongoing in our world. For those of us that escape them it is for us to reach out to help those who are caught up in them.

For me it is as simple as this ~ if you have faith in anything then have faith in one another.

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.

IMG_2149

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

 

Hair today, gone tomorrow! #SV2 #SexualAssault #ConsentIsEverything #Fundraising #VitalCounselling

sv2-supporting-victims-of-sexual-violence

Sadly, two people I care about very much have been sexually assaulted, something I wouldn’t wish on anyone. For the purpose of this blog I shall call them “x” and “y”.

On both occasions our local rape crisis centre, known as SV2 ~ Supporting Victims of Sexual Violence; helped them to work through the assault. To face and come to terms with what had happened to them and to decide on how they wished to proceed after informing them of the options available to them.

You can read more about the work SV2 do here.

This specialist counselling service was crucial in helping both x and y to pick themselves up and continue with their lives. More importantly to learn who their true friends were and who to surround themselves with.

For them the best approach was to retreat from large groups and focus on the individual people they could trust and feel safe with.

These specialist counsellors are incredible, the work they do far~reaching and essential to the victims of this type of assault.

Seeing how they helped x and y made me want to do something to help raise funds to pay towards ongoing costs to maintain the service.

Sadly I learned that on 24 July this year SV2 were unable to secure any future long term funding for therapy.

They have a significantly high waiting list and without adequate future funds they were forced to decide how to spend what they had.

The difficult decision was made to close the waiting list meaning they could not accept  referrals for the time being.

Hopefully they will be able to review this decision in a few months time and reopen the waiting list.

I cannot imagine how x and y would have managed without the support and care of SV2, their help was critical in helping them to cope with their assaults.

The trauma caused by these assaults cannot just “go away” and if left unresolved can leave the victim in a very dark place, ruining their lives and relationships with others, living in fear.

Even after undergoing therapy both x and y continue to suffer PTSD and dissociation because of the trauma they experienced. However, at least now they understand these feelings and how to work through each episode with thanks to the therapy provided by  SV2 specialists.

I am deeply upset that SV2 haven’t been supported and given long term funding. Their service deserves to be maintained and funded. It is deeply worrying that so many people are sexual assaulted and therefore requiring this help. I wrote a blog previously about consent which you can read here.

SV2 is a charity, which surprised me as I feel they should be under the umbrella of a mental health services.

In their “about us” section they explain how they are funded…

“SV2 is a charity which is commissioned by NHS England, Derbyshire Constabulary and Derbyshire County Council to provide the County’s Sexual Assault Referral Centre (SARC) service. This service includes forensic medical examination, crisis worker support, 24/7 Advice Line and support from Independent Sexual Violence Advisers (ISVAs). We work in partnership with the police, but independently in order to advocate for anyone who accesses our services. 

In addition, SV2 is currently funded by Derbyshire County Council, Derbyshire Police & Crime Commissioner, NHS Clinical Commissioning Groups and Children in Need to provide specialist counselling services for victims and their families – all ages.

SV2 also provides Derbyshire Police & Crime Commissioner’s emotional and practical support service for victims of less serious sexual offences such as indecent exposure, revenge porn, sexting, etc.

SV2s work is overseen by a Board of Trustees which has responsibility for the ensuring that the Charity delivers its aims of: reducing the impact of rape and sexual abuse on victims (male and female) and their families; encouraging reporting of rape and sexual abuse; supporting victims through the legal process and; reducing the incidence of rape and sexual abuse by raising awareness.”

I want to help raise funds to assist with their ongoing fundraising. I needed to think of something that I could do personally to help. Long walks, climbing challenges, all kinds of physical events are not viable options because of my chronic health issues. So in the end I decided to shave off my hair.

I have shortish hair but a long fringe ~ which I hide behind. I’m not a confident person, although sometimes I may give off that impression. I am exceptionally shy and self-conscious, so by shaving off my hair I am making myself feel exposed and vulnerable, with nothing to hide behind ~ exceptionally visible!

On Wednesday 1 November I shall be shaving all of my hair off, photographs and video will following in a blog afterwards.

This is, I imagine how victims of these crimes often feel, vulnerable, exposed, isolated, watched.

So, if you would like to help me raise funds towards my goal of £500 to help keep this essential service going and hopefully help towards SV2 being able to reopen their waiting list for victims I would be exceedingly grateful.

My fundraising page is on the SV2 website, every penny raised goes directly to them.

If you could donate anything at all it would be hugely appreciated.

I hope against hope that you never have to seek support from a service like this. If you do, can you imagine how awful it would be to be told that the service is not available to you as the referrals have been stopped due to lack of funding?

The link to my fundraising page is below, thank you for reading this blog and any “shares”, “reblogs”, and/or donations are genuinely deeply appreciated.

https://fundraise.charitycheckout.co.uk/svtwo/pf/tanya-mawer

Thank you

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Dare to Dye

What is the first thing many women do when they leave a relationship? For me, and I don’t think I am alone in this, I usually change my look somehow. This usually means changing my hair colour and/or cut.

Today is the day I dare to dye! I am in the process of breaking up with my black dog and putting him in  kennels! So what better way to make myself feel better than to completely change my look

Depression has been too dominant in my life, dragging me under it’s wheels and pummelling me relentlessly. So I am thumbing my nose at him, mentally putting him in his box, chaining him up, submerging him in concrete and building a watch tower on top of him with 24/7 look out on duty to recapture him if he escapes!

I don’t know how you feel about older women colouring their hair with vibrant bright unnatural colour. I have as far back as I can remember coloured my hair and had most colours available and many different styles. These days I tend to keep my hair short so am limited on styling options. That’s why I am such a fan of hair colour, it transforms your instantly, whether good or bad ~ it’s a change.

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It may come as no surprise to many that my favourite colour is purple, next to that it’s blue. My piercing jewellery is blue/purple titanium and so I decided to go purple/turquoise (because I couldn’t find the blue) hair dye.

Here are the colours and bleach I just picked up..

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Fist though we have to bleach it and as my hair is dark it will go yellow/orange first. Once we have the right colour (as in lightest shade of yellow/orange possible) we go for the dye.

Bleach going on..

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Ta da ~ yellow/orange hair..

Colour going on now..

Results..

I LOVE it but it needs a second session of colour to go over the bleached areas again which I’ll do later this week.

Life is so much better with colour in it don’t you think?

So, my motto for now is “fake it ’til you make it”

I will be happy again and with the aid of my therapist, medication, meditation, family & dogs I am sure it won’t take too long.

colour

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Reasons To Be Cheerful//A Work In Progress #depression

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Since my last blog post which you can read here, where I opened up about my depression and recent breakdown, I have been exceptionally lucky to access help almost immediately.

The day I acknowledged, with a few heavy hints from Dave and the girls, that my low mood had reached the point where I needed outside help to “fix” myself, I booked myself a doctors appointment and referred myself to Trent PTS for help.

Dave drove me and came into my GP appointment with me because I was so nervous I could barely speak. I am so grateful that he did because once in that doctors office I became beyond overwhelmed by the enormity of how awful I felt and how terrified I was, that I burst into tears. I tried to explain but kept faltering, so Dave stepped in and spoke on my behalf, with the odd sniff, nod and explosion of tears from me, quietly wringing my hands and rocking on my chair! The GP increased my antidepressants and checked I had referred myself for talking therapy. He then discussed my recent alcohol abuse and agreed that I should stay off the sauce and that he wanted me to book a appointment to be re~evaluated by a doctor in 4 weeks time, which is on 30th August.

THEN, only a few days later I received a call from Trent PTS offering me my first appointment with them on the Monday ~ 6 days after referring myself!

I met my therapist and we covered an awful lot of ground in that first appointment. We filled out the timeline from my birth to the present day and worked out which areas of my life had been affected by depression, what were the triggers and how we could best address it. Having had my black dog since my late teens meant we had to walk back in time and discuss the worst episodes, what medications I took and for how long, along with which therapies I had received. Needless to say I went through a fair number of tissues during that appointment.

My major issue is of negative thought relating to my inner critical self and the monologue of chastisements I receive from it through out each and every day. Feeling of not being “enough” and my role as a carer throughout my life, how not always being able to “fix” things distresses me and my “on the spectrum” issues. Finally the more personal issues relating to self~esteem, self~worth and lack of confidence. My sessions of CBT will be to work on all the above and hopefully help me find a way to love myself unconditionally by accepting and “owning” who I am without shame or excuses. She has her work cut out for her ~ but we gelled and I feel more positive now about the future and my ability to learn to cope and live with my depression more successfully.

Before I start on the work of CBT, which starts properly on Monday coming, I have been told to look at my life with positivity ~ to find the “reasons to be cheerful” in everyday life.

When I feel gut wrenchingly sad, when the lump in my throat and stomach feels like it’s killing me, to take a minute, close my eyes, relax and then think, think hard, what have I done or seen that is a reason to be cheerful.

I have also found out that ~ apart from feeling incredibly silly ~ forcing yourself to laugh can help too, you start out feeling a complete tool, forcing out this odd sounding laugh ~ but the more you do it something happens. You start to actually laugh, for real, at yourself, at life, at nothing in particular, but you laugh ~ sometimes I have to say manically, but it helps to release the tension that’s been bottling up and ready to explode.

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So since my last blog post I have been seeking “reasons to be cheerful” and I thought I would share them with you..

  1. My dogs, they provide me with unconditional love, a warm body to cuddle into when I am feel horribly low and a listening ear when I need to offload.
  2. My family, they are giving me unquestioning space when I need it, love unconditionally and laughter ~ they know how to push the laughter button on me and make me realise that there is light at the end of the tunnel.
  3. The discovery of Huel, it is not only nutritionally complete but also vegan and being soy intolerant to find a meal replacement shake that I can tolerate is fantastic. It’s oat based and reminds me of original ready brek in flavour ~ you can buy different flavour boosts but I find I enjoy  it without them. It mixes in the tumbler provided brilliantly with no lumps to gag your way through. I have a shake for breakfast and another for lunch, which helps me conserve energy and focus it on other things. Later when Dave gets home we cook our evening meal together. Today I lived a little on the wild side and had a blueberry muffing with my Huel. IMG_1647
  4. Next reason to be cheerful is my new watch which not only tells the time but tells me the weather, my heart rate, counts my steps and also links to my phone and so vibrates when I have messages. There are other applications too but these are the ones I use ~ and its purple!IMG_1639
  5. I am very slowly losing weight and am in 2 belt loops, 3 at a push ~ and my jeans are becoming looser on me. I’m hueling during the day and eating whatever I want for dinner at night, but think the combination of Huel and being booze free are why the weight is coming off. IMG_1641
  6. Three years ago I found a really comfy pair of shoes in Tesco, I wore them until they fell apart and having been looking out for them ever since, two years passed and no return of my favourite comfy shoe ~ then today they were there! So I plucked the last pair of size 7’s off the rack and am now happily wearing them. My feet are smiling at me and thanking me profusely. IMG_1637
  7. Hubby has just purchase a new car, for his everyday and for the family excursions ~ I am so in love with this vehicle. It is quiet, automatic, huge, and unbelievably comfy. It has air con, working stereo and takes LPG gas as well as petrol. Today, to make me happy Dave took me for a spin in it and said when I feel up to it I can drive it! Now this car doesn’t drive it glides, I spent the entire time grinning until my face ached!
  8. My penultimate reason to be cheerful for today ~ it’s totally unexpected, and still for my life I cannot see what this woman saw. I was in my car the other day with my first born and needed to ask for a barrier to be lifted. The woman in the kiosk just looked at me and pointed at the front of my car and loudly exclaimed “BATMAN”. Baffled I looked at Keisha and she at me, none the wiser ~ so the woman said “your number plate, BATMAN”. Clueless still I mumbled a “yeah” and she lifted the barrier. When we got out of the car both of us looked at my number plate and still don’t see Batman ~ do you? IMG_1636
  9. Apps ~ there are apps for almost anything! I have become reliant on a few which I will share with you.
  • Nomo, for my sobriety ~ my GP wanted me to join AA but Dave helped me persuade him that this app was keeping me on track, I had to hand him my phone to show him the app first!
  • Headspace, my meditation app, which really relaxes me and this is the first time I have been successful in meditating thanks to the soothing tones of the gentleman guiding the meditation sessions. I am currently going through the three basic foundation meditation  packages and have downloaded, aside from the three basic ones, a number of other packages on areas I feel I need to work on, depression, anxiety, stress, sleep, pain management, self~esteem and acceptance. Finally I will tackle the six “pro” meditation packages to finish off.  Hopefully after that I can either continue to use the app or meditate flying solo each day.
  • Lose It, I use this mainly as a food diary and to track my weight and body measurements. I can use the barcode scan facility of the app to upload foods not already in the data base, if that’s unsuccessful I can than manually upload the data. It records my daily nutritional intake as well as protein, fat and carbs.
  • Clue, Being peri~menopausal I am experiencing all kinds of hell from my fluctuating hormones. Hot flushes, irritability etc ~ you get the gist AND crazily irregular periods. This app allows me to record all my periods in detail but more than that I can record my body functions, vitality, activities and medical information too. It also allows you to export the information to your email so you can print it off to show your doctor, should you so desire.
  • VeryFitPro,my new watch a Letscom Activity Tracker with Wrist Based Heart Rate Monitor binds to this app and allows it to track my heart rate, steps, sleep cycles, etc. I can then use it to send data to my email to print off to show my doctor if necessary. I am using it to gradually increase my activity to a point where I can take the dogs for a short walk ~ something I miss very much. The trick is to keep your heart rate within a certain range and successfully maintain a certain level of activity for a period of time without causing post exertional malaise. My starting point is 3,000 steps, which I know for healthy folk is a cinch ~ but for me it’s a stretch. Once I maintain happily 3,000 steps a day I will increase to 3,500 and so on. It’s a very slow and steady exercise but one I am determined to succeed and supported by my occupational therapist.
  • Apple Health, this is already on most folks iphones and all my apps above link to it. This means I have a place where I can catch up on all my apps and see how they dovetail together to give a good overall picture of my health. It also has a page which can be accessed even when your phone is locked where I have my name, age, illnesses, medications, allergies and next of kin listed ~ which gives me peace of mind.

Just in case you are interested in heart rates and beats per minute. I looked up that the average persons resting heart beats between 60~100 beats per minute.

Next I worked out how much the maximum heart rate should be for an average person whilst exercising ~ this is worked out by deducting your age from 220 ~ being 48 mine is a maximum exercise heart beat of 172 beats per minute

Then I calculated the target heart rate whilst exercising should be within the following range;

(220 – age) x 50% which for me is 86

(220 – age) x 70% again for me is 120

My target range is to be within 86 ~ 120 beats per minute whilst exercising, which in my case is just walking.

So finally, I just wanted to say a heartfelt THANK YOU to each an everyone of you for your messages of support. I cannot express strongly enough how much that means to me.

I just want to say I am getting the help I need and am fully supported by my A~team at home. I hope you are too ~ reach out, ask for help, you are not alone.

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