I love this song and the lyrics call to me ~ especially the chorus..
“This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me
A lot of fight left in me
Like a small boat
On the ocean
Sending big waves
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion”
Fight! We all have battles we face in our daily lives but some are more than others. It’s a fight against the things that get you down, be it other people, your circumstances, your physical or mental health, relationships etc. Yet, saying that I don’t mean to place one persons battle above another because everything is relative. One persons seemingly small battle is to them the same as another persons perceived larger one.
Today, right now I am fighting. I feel monumentally overwhelmed by life in general. So many factors are beyond my control and it frustrates the hell out of me.
I am beyond exhausted, tired to my bones, I feel ancient. My cognitive function worries me, I know docs have tried to reassure me but I think anyone who struggles in this way will always have that fear of potential dementia. The other day I was trying to find the word for kitchen towel and after brief charade to my husband he twigged and filled in the blank for me. It sounds silly but when these episodes add up, multiplied by poor memory, difficulty following conversations and using the wrong words in sentences and not even realising ~ it’s scary!
Then you have the poor energy issue which means that my house looks like a bomb site and the floor is filthy because I haven’t hoovered or mop for over 4 weeks now ~ you can barely see what colour the stair carpet is for all the dog hair on it. Adding insult to injury I had to wash my feet before bed because of walking barefoot on the laminate floor and the resulting dirt on my feet.
Thank goodness for dishwashers, microwaves, tumble driers etc though ~ we don’t iron in this house, clothes get dried and you have the choice to wear it creased or not at all. We utilise any energy saving devise, meals, options possible to try and help us in our daily lives.
The thing that really bothers me though is how unpredictable my health is and the impact that has on everything I do. I also worry about my family, they all have invisible chronic illness too ~ it’s a constant fight and trying to help each other stay afloat and cling on for better days, which is so hard, not just for me but for all of us.
Having to constantly explain to others and gently remind them what we face is also exceptionally hard. No matter who they are it is always a struggle for them to equate an outwardly healthy looking person as being sick.
The thing is ~ we put on a front whenever we see anyone outside of our small family tribe. This isn’t necessarily for your benefit but more for our own, it’s our own silly pride that makes us create the illusion that we are okay when we aren’t. We want to feel “normal” and fit in, even if it’s just for a little while.
It’s not my place to share my incredible families individual battles here, but each of them are working hard this week, as they do every week, to appear okay and putting on a brave front. My girls are utilising every ounce of energy they have whilst facing the winter bugs and viruses that are doing the rounds. This impacts on their health more than other folks because of weakened immune systems, they fall harder and longer with each bug.
My husband is being an absolute star in running us around, shopping, cooking, stacking dishwasher, driving here and there whilst exhausted himself.
This week is a particularly full on one, for numerous reasons. We have a special family members 80th birthday to attend on Saturday. It is going to be really tough to muster up energy to go but we will because we rarely get to see our extended family in the flesh. They live a two and a half hour drive away and the party is afternoon into evening but not finishing late. We will be going just for the party then returning home ~ a lovely friend of one of our daughters has offered to dog sit for us due to the length of time we will be away, which is a huge relief.
Simple get togethers like this are a given for many healthy folk, for us we have to plan, rest, make contingency plans and hope against hope that on the actual day we will all be well enough to go. Our track record isn’t great, usually only two perhaps three out of the five of us manage to go.
I’m just majorly pissed off today, being tired and emotional does that. I get weepy and sad then angry as hell. THEN, I start to feel awful and guilty as I imagine all the other people in situations worse than mine. It is tsunami of emotions, each taking turns to take the helm and bash me relentlessly, screaming in my brain at me.
It’s no wonder people living with chronic illness also suffer from depression, anxiety and stress. Trying to do so much and struggling each and every day with life. Having invisible chronic illness is harder still, that’s because whilst you face your own internal battles you are having to try and justify to others why you can’t meet them, speak to them, be like them.
Even when folk say they understand, sometimes you wonder if they truly do ~ especially when the media still stirs up so many untruths and unhelpful advice to “get better”. Sadly, right now there is no cure, no real treatment ~ only treatments for symptoms as and when you need help with them, to make you more comfortable.
Getting up each morning is like wading through treacle, it’s such a monumental effort to get up and go downstairs. Then to have to wash and dress is another massive drain to the battery. Although, from November the first at least I won’t have to worry about washing or styling my hair because I won’t have any after my head shave fundraiser.
So today I am writing this blog to remind myself to not give up, to continue to fight. I’m human and so it’s okay to cry, to scream, to feel self~pity and want answers, so many “whys” in my head with no resolution or answers available.
I will look for the bright side of every dark moment and if there isn’t one to hunker down and ride it out, knowing that at some point the light will reappear.
To my friends ~ I apologise if I am distant and not interacting with you. Just daily routine chores are taking every ounce of energy I have. Reading posts/threads on social media is an issue right now for me. I read them, then re~read them but don’t fully comprehend what I am reading, so have to read a third time. Then I want to reply, to comment to let you know I am there for you and support you but the words don’t flow. The sentences sound rambling and disjointed ~ so instead of hitting “post” I hit “delete” and then “like” or “love” your post instead. Know that I am around but lurking on the side~lines, sending love your way and hoping you understand.
This blog post has been edited and re~edited umpteen times ~ however I apologise if some of it sounds disjointed or rambling, this is as good as it gets right now.
I’m retreating off now ~ but felt it necessary to share this with you and hope you understand why I am distant right now.
My next blog will most likely be the one showing you my newly bald head ~ which will be in 9 days time.
If you are struggling right now I hope you find better days ahead very soon. Whatever happens we must keep on fighting ~ somehow, someday I am sure life will get better. Always hold onto hope and don’t let it wriggle out of your grasp.
I leave you with this song, quite simply because I love Freddie’s voice and the lyrics speak to me, I hope you enjoy it too..
“These Are The Days Of Our Lives”
Sometimes I get to feelin’
I was back in the old days – long ago
When we were kids, when we were young
Things seemed so perfect – you know?
The days were endless, we were crazy – we were young
The sun was always shinin’ – we just lived for fun
Sometimes it seems like lately – I just don’t know
The rest of my life’s been – just a show.
Those were the days of our lives
The bad things in life were so few
Those days are all gone now but one thing is true –
When I look and I find I still love you.
You can’t turn back the clock, you can’t turn back the tide
Ain’t that a shame?
I’d like to go back one time on a roller coaster ride
When life was just a game
No use sitting and thinkin’ on what you did
When you can lay back and enjoy it through your kids
Sometimes it seems like lately I just don’t know
Better sit back and go – with the flow
Cos these are the days of our lives
They’ve flown in the swiftness of time
These days are all gone now but some things remain
When I look and I find – no change
Those were the days of our lives yeah
The bad things in life were so few
Those days are all gone now but one thing’s still true
When I look and I find, I still love you,
I still love you.”
Last night and this morning have been highly stressful. I spent the night waking up to hearing conversations that apparently weren’t happening.
I also kept falling back into the same dream, going to the point I left when waking ~ I don’t remember the dream but do remember it unsettled me.
Throughout the night I woke up several times because of urgent whispering in my ear, only no one was there! Each time I got up to the loo to make sure I was awake and to hopefully “shake it off” before getting back into bed and to sleep.
I also “heard” my middle daughter having conversations with people between the hours of midnight and 4.30am, I know very specific times but I looked at the clock every time I woke.
Finally this morning I woke up to hearing my husband having a whispered conversation with my eldest daughter ~ only he had just got up, wasn’t talking to anyone and eldest child is at her own place in town!
So I am feeling a little freaked today ~ and tired!
The events of last night and this morning had me searching for reasons why I had this experience. I do remember my middle daughter having auditory and visual hallucinations when first diagnosed with ME post meningitis.
I think the doctor at the time explained the reason for it as her brain being tired and so misfiring signals ~ or something like that.
Now I am up ~ in my pjs & dressing gown whilst caffeinating to ensure I am really awake, I am having a google to see why this is occurring. It’s worrying enough having cognitive issues with speech and memory without this on top!
Now I have intermittent tinnitus ~ but that just is weird ringing and noises in the ear, it comes and goes thankfully and is rarely continuous for a long period of time. The auditory hallucinations though, these are a new occurrence and one that has really freaked me out because the whispering conversations sounded so real.
So I googled..
“What Are Auditory Hallucinations?
Auditory hallucinations are false perceptions of hearing sounds, like voices, music, etc.,without any real sensory stimuli. Auditory hallucinations have been reported in those suffering from epilepsy, brain tumors, migraines, dementia, Alzheimer’s disease, Lewy body dementia, bipolar disorder, post-traumatic stress disorder, and Parkinson’s disease. These hallucinations have also been known to be induced by drugs, such as cocaine and amphetamines.
Perhaps most surprisingly, auditory hallucinations have been reported in approximately 15% of people with no mental or physical health problems whatsoever. The most common condition associated with auditory hallucinations, however, is schizophrenia, with a reported 70% of schizophrenic patients experiencing them.”
The same article goes on to say that hearing auditory hallucinations is usually caused by imbalances of chemicals in the brain, most notably Dopamine. Another cause could be due to the Thalamus ~ this is because the thalamus sends signals from our ears to our auditory part of the brain which then interprets what sounds are being heard. Finally, the article says it could be to do with abnormal activity in the right hemisphere of our brain.. If the thalamus is playing up then auditory hallucinations could follow.
Interestingly, on googling Dopamine for patients with Fibro & ME this came up, dopamine is a neurotransmitter and people with Fibro and ME tend to have low dopamine levels which can result in a number of symptoms and conditions.
I looked up Thalamus issues relating to ME and Fibro next and it came up with articles informing me that I’m not alone in this, the article; Sensory Overload: Study Suggests Brains in Fibromyalgia Are Being Pummeled With Too Much Information was very interesting. This explains my cognitive issues as well as the auditory hallucinations ~ I know my “dementia” like cognitive issues become much worse when I am suffering from Post Exertional Malaise (PEM), which is often as I am currently struggling to pace effectively so seem to permanently be in a “crash”.
The article says that people with ME and Fibro become easily over stimulated by outside factors and so experience sensory overload. Usually, for healthy folk, the body fires up the sensory gate which filters out what is important and what isn’t. For folk like me with ME and Fibro, this sensory gate is often broken, it is thought that the area which is broken is in the part of the brain stem known as the “reptilian brain”. It is the area of the brain necessary for survival but doesn’t come with high cognitive functions. Usually it protects the brain from over stimulation but not when broken for us folk with ME and Fibro.
On further googling I came across this article, which says that anxiety can cause simple and complex hallucinations too.
This has made me feel much better this morning, I’m not freaking out so much now that I know there are reasons for it ~ the most likely cause is my poor old brain is feeling overwhelmed and so misfiring with messages received making me think I am hearing things that quite simply aren’t there.
I know I haven’t gone into any great detail here and I won’t because I don’t want to stress my brain/body out any further. However, after my wee google session I now feel reassured that it’s nothing to be concerned about. Just as numerous doctors and consultants previously reassured me about my “dementia” symptoms, that I don’t have it but that my body is so exhausted due to my whammy of chronic illnesses that it misfires and causes my cognitive functions to nosedive. I am now looking at the auditory hallucinations as an extension of that and realise that the severe lack of pacing over the past few weeks must be the contributing factor in it all.
Thankfully, on Friday I will be disappearing off to my “happy place” ~ away from stimulation and into the arms of the coast, sea breezes, salt, sand and sea. By the end of next week I hope to have returned to some semblance of normality ~ here’s hoping!
As with anything though, if you experience anything out of the norm with your health/body I would always advocate that you get it checked out.
My motto is;
What do you do when something beyond your control affects your day, your week, your year, your life.
I bought a hoodie, one of two that I love, from the talented Stacy Hart aka Mama Chill. Both were from her “running on empty” range, which are extremely appropriate for anyone with a chronic illness which affects energy levels. If you don’t know Stacy then please head on over to her blog because she’s one sassy, incredible fighter and someone I respect very much.
Here’s an old pic of me wearing the black one I have (I have another in grey with a different graphic on the front ~ it’s a skeleton running with the words “running on empty” alongside it). Next time I wear them I will have to take photos for you!
I know that if you follow this blog you are aware that I have a number of chronic invisible illnesses which affect my cognitive function as well as my immune system, energy levels, mobility, gut mobility and cause me pain in my joints and muscles (among a myriad of other symptoms). If you are here for the first time I’ll list them now with the links for further information. Myalgic Encephalomyelitis, Hypermobility Ehlers~Danlos Syndrome, Fibromyalgia, Diverticulitis, Depression, longstanding since my late teens and lastly pesky kidneys, stage 3 kidney disease that currently only requires annual blood tests to monitor.
So now I have that out of the way, I know I’m greedy hogging all these conditions instead of sharing them around, you will understand why often I have to adapt to circumstances beyond my control.
Referring back to Mama Chill, she is quite the wordsmith and wrote a poem about M.E which, to be honest, could be also written about my other conditions too ~ especially the Fibro and HEDS..
It’s exceptionally frustrating to not be able to plan to do things ahead and know 100% that you will be able to make it. I do plan ahead, try to take in all considerations, make contingency plans, but even then I can’t guarantee that on the day, despite all preparations, I will be able to do it.
So, what do you do? Is my question, to try to live a life to the fullest whilst also managing your physical and mental health to the best of your ability.
One of the girls doctors came up with a brilliant analogy, which I prefer to The Spoon Theory written by Christine Miserandino. Although the spoon theory is great, for me, the car analogy seems easier for me to understand, clearer I suppose.
Imagine your body is a car. Not a bright shiny new one but a real old banger, the exhaust is hanging low and smoking, the speedo is broken, it’s not economical and is covered in rust. It’s old, its rough around the edges, not a great beauty to be honest ~ but it drives, it tries, it may need jump starting now and then, the battery becomes flat easily so you keep a charger in the boot, along with the jump leads, spare tyre, fuel caddy and the portable tyre air compressor which plugs into the cigarette lighter. Knowing its age and potential for breaking down you also keep a blanket, bar of chocolate (supersized), warm coat, warning triangle for the road as the hazard lights don’t work and a portable mobile phone charger for that AA call ~ your poor car is too old to have built in usb chargers and you daren’t overwork the poor cigarette lighter in case you need it to plug in the tyre air compressor.
Our bodies with chronic illness are like the old banger ~ our gas tank may have a few corroded holes in it too, so no matter how much fuel you put in it, it continues to trickle away meaning you don’t get as far as you would like on it and need to take frequent stops to top up.
Like the old car, we can prepare as much as we can to deal with any issues but can’t always foresee a major break down, when the tow truck has to be called in and major repairs carried out.
We love our old car, it’s weathered many storms despite all adversity and we can’t afford to trade it in for a new model anyway. Instead we scour the papers and news outlets for news that fixes have been found for our model of car, that we can patch it up and the garage will work it’s magic until it is like new, highly economical on fuel, exhaust is secured and no longer smoking and we know we can rely on it come hail or snow.
We are at the stage with my illnesses where we are still scouring the news, no fixes have been found ~ although many attempts and trials have been made. We have to be patient and sit it out, hoping that a mechanic somewhere will have a moment of genius and figure it all out.
That analogy makes more sense to me than spoons ~ which perhaps is just because my brain can see the picture more clearly that way.
So, what do I do? I wait, I hope and I do whatever I can to help myself feel better, do better, plan better. I don’t always get it right. I often run out of fuel halfway to my destination and spend more time than I would like on the ramp in the garage with mechanics scratching their heads before patching me up and sending me on my way.
Life isn’t bad though, it could be far worse. Humour is a factor in how I can deal with the cards life has dealt. Plus my dysfunctionally functional family around me keep things interesting and none of us get to keep the “I am considerably more poorly than you” t~shirt.
I wait for medical breakthrough.
I wait for awareness to break through to the masses.
I wait for compassion and understanding from others, who as yet don’t understand the limitations these illnesses bring.
I wait for health care professionals to all be on the same page and following current protocols instead of those initiated by dinosaurs from the past.
“One day” I tell myself “one day we will find a way around these illnesses and reclaim the life I want for myself and the others who are suffering too.”
Hope must be kept alive, yes you can chunter and swear until the air turns blue to vent, to blow off steam ~ then re-centre and continue forward.
Remember ~ there is life in the old banger yet!
This morning I woke after a night spent tossing and turning in extreme discomfort. If pain were a person then he is walking inside my body wearing hobnailed boots and stomping on every joint, every bone, making them feel tender to move or touch. Then to turn it up a notch it feels as if fire ants have been released into my veins, making my skin feel as if it’s been scalded.
I wonder to myself whether my previous blog about progress tempted fate. I am now in what is known as a “crash” or “relapse”. My body is making it difficult for me to do anything at all ~ I try to distract myself from the signals firing off from my pain receptors. Tapping my hand to try and distract my brain and ignore the pain signals helps a little but then I tire, stop and it hits me again. The waves ebbing and flowing, crashing down on me in varying levels of violence.
I am downstairs, not in bed because I can keep an eye on the dogs and I feel less of an invalid being here. I have access to a downstairs loo, the kettle, the garden and the internet ~ the sofa and footstool are pretty comfy and my slanket is cosy and warm.
I am writing this blog in dribs and drabs from the comfort of my sofa ~ having the option to dictate is a huge help but I have to manually correct the typo’s ~ it would appear I need to learn to enunciate more clearly.
I’m resting, taking the tablets, applying heat (which is soothing for me as opposed to cold), applying topical pain relieving gels, anything I can get my hands on to ease the pain, whilst looking for distractions for my mind.
I have no idea which illness has triggered this response, I am thinking most likely the fibromyalgia, but could also be a combination of all three, ME, Fibro and HEDS. So I am burying myself away for a few days, hibernating until the pain abates. Everything is on hold ~ no photography for a second week in a row, it’s fair to say I’m feeling a little ticked off.
My mood is up and down, it’s hard to stay focused and positive when you are not able to control your own body, that it lets you down without any warning. I am feeling angry, sad and frustrated at life, I’m seriously pissed off and have so many whys that I know cannot be answered. I suppose it’s just life, I am lucky things aren’t worse but sad that they are what they are.
My black dog is waiting to be released, he knows I am weak and is ready to take advantage ~ I am trying my best to control him. To remember the lessons given to my by my therapist and not to allow him to regain control.
It’s hard! He’s howling for release, ready to jump at any given moment.My weapon of choice is laughter ~ I am fortunate that my family follow the same path, when times get tough, we go a little insane and let the laughter out, it may be a little scary and manic but it provides a release.
So talking about laughter I share with you my “what the fuck?” moment from this morning.
I came downstairs for a warm drink, tablets and to relocate from my bed. Looking across at my dining room table from my vantage point by the boiling kettle I notice something decidedly odd about my plant.
To fill you in this plant was a birthday gift from my dad which I received in May. It came in a pot and only had one shoot ~ it was a cutting he had given me from a plant he had at home. What it is we have no idea, the general consensus is that is its some kind of lily.
I was told by dad that it was a patio plant and to keep it outside ~ one day outside and it was decidedly worse for wear so I decided to bring it inside. From it’s position from the dining room table it has plenty of indirect light and is protected from the battering wind.
Since being on my table it has grown and we now have 3 leaves. It would appear that overnight something strange has also happened..
Now, how on earth? The mushroom next to the stalk of my plant is actually coming from the stalk!
ALSO, to top it off hundreds of tiny weeny flies are coming out of the soil, which looks alive with them and running around over the table! Thankfully my hubby is ex~pest control and had some bug spray to curb the wee flies from expanding their ranks whilst also not being toxic to my lily ~ or is it Alien Plant?
If you are of the green fingered variety I would love to know what this plant is and also how on earth it birthed mushrooms and teenyweeny flies!
Writing this blog has helped pass the morning for me, now it’s time for a nap ~ and hopefully some respite from the pain and discomfort.
Hope your are having a good day, if you are sending you a crisp high five ~ if not sending love and sympathy.
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.
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:~
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.
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 ~
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.
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.
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.
So since my last blog post I have been seeking “reasons to be cheerful” and I thought I would share them with you..
- 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.
- 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.
- 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.
- 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!
- 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.
- 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.
- 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!
- 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?
- 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.