Pushing through the pain

Ok, so this post may get a little soap-box like but it’s something that I need to talk about because its become a huge issue for me.

So, most people have heard the phrases ‘pushing through pain’ ‘no pain no gain’ and similar ones.. 

But when you have chronic illnesses or any illness that leaves you physically or mentally bodily exhausted these phrases are.. Well, rather annoying and very very wrong.

It’s something a doctor or specialist wanting you to do G.E.T or start physical excercise would say “you need to learn how to push through the pain, push past it and you’ll get stronger, control it and not have it control you!” 

Which is why, we now have thousands upon thousands of people who tried or were bullied into G.E.T or a exercise routine, become severe more debilitated  and set back health and body wise years.

Because pushing through the pain simply doesn’t work. Pushing your body to do anything more than it should is going to have devastating effects on your health and body. Its going to push you too far and completely disable you for days, weeks months or years.

Our bodies arent like a healthy persons. They cannot cope with everyday tasks, let alone 30 minutes of cardio and physical exercise. Cannot cope with the strain it puts our muscles under. Cannot cope with the moving, lifting and shifting our body’s need to do when excercising.

Our bodies will simply revolt protest and then literally disable itself. And us. Because it should never ever be put under this kind of strain.

“Oh but if you exercised more you could walk better, its because you don’t walk alot that you can’t walk well try walking more and you’ll be fine again..”

Nope. Nope with a massive dollop of, no chance in the world no way and never ever on top.

We are sick. We are too sick to do washing up, brushing out hair, to get out of bed.

To sick to eat, read, watch TV, write.

But exercise is going to help us?

Would you say that to someone who has the flu, viral infection, measles, meningitis, sepsis… Would you say, oh go for a run that’ll cure you! 

It would never ever even be suggested! 

So why to us? 

Because our lack of body ability annoys you? Frustrates you? Our laying in bed is a hinderance to you. Our limitations are seen as lazy because you cannot bother to continue to help us as our illnesses last longer than a few weeks? 

Chronic illness is just that. Its chronic, its all day everyday and mostly for ever. We are never ever going to be cured, not unless a super drug is invented. Which we would love and rush to have because shock horror we do not want to be like this.

To be too ill to do anything. To live properly, to do anything without it making us even sicker or having a massive flare.

No one would wish that on, or for, themselves. Its not exactly a childhood dream is it like asking a child what they want to be in future…

 “when I grow up I want to become sick and  disabled, lay in bed all day in agony, bodily exhausted live in guilt that I am unable to be the mother, lover, sister, wife, daughter that’s expected of me and I want to be, and not able to do anything without causing my body to revolt against me”

Not exactly living the dream is it? 

We are even subjected to this kind of thing in our own support groups and forums.. 

You always  get someone reaching out for help, support in a post, at breaking point in so much pain they’re devastated both physically and mentally. And so many people reach back and help, be there and in joint understanding comfort and words of support.

But then… Some toff nosed self centered self invested of importance comes out with this treasure for this person reaching out for help..

“Oh well, I don’t let the pain control me. Control my doing stuff with my kids/partner/job… I push through it and it’ll never ever beat me!”

Well good for you Doris, I’m sure that nugget of useless, self obsessed, arrogant, un helpful in every and anyway will really help that person feel so much better!! 

I sit there looking at the comment and suddenly I  can think of something I could push… And it ain’t the pain.

Some of us are more severe than others. Some able to work still, or do things that others that are a bit more severe cannot even think about let alone be physical able too.

People need to realise that, that just because you may be able to do something that doesn’t mean others can. And not because we are lazy or cant  bothered but simply, we cannot. Much like a lot in life, not just illness.

And no, by saying that I am definetly not suggesting that your fibro isn’t just as important or as serious as ours . Or should be taken lightly or without the same kind of respect and recognition.

Just that for a lot of us, pushing through the pain is simply not an option. And we feel awful enough about it, without judgement or phrases that just do not fit into our lives our bodies or world around us anymore. 

We don’t need to feel anymore isolated, alone, mis understood or mentally anguished than we already do.

Please think before uttering such phrases, suggestions or comments to someone who is chronically ill. For us living in a world of such pain. And our loved ones who are also affected by it. 

Being cared for

The title of this blog is something I’ve always shyed away from.

Being cared for wasn’t in my vocabulary before chronic illness, nor something I thought about without pushing it to the back of my mind to be opened when I was in old age.

Unfortunately chronic illness has not only made me face the realities of needing to be cared for in my 30s and not in my 80s, it also gave me a huge kick in my independence and future.

The deterioration the doctors spoke to me about has continued to eat away at my health and body abilities.

When the doctor mentioned my deterioration, I couldn’t imagine how I could get worse because I was really sick anyway. How could it get any worse??

But it could and has.

In 6 weeks my strength, ability to function, conditions and mobility has become so much worse that I need to be cared for and looked after or out for all the time.

Plus a new symptom has appeared, anything I eat gives me massive stomach cramps for hours..

It’s not like I need to eat to survive…

Then last week I noticed something unusual and slightly personal woman wise so just a heads up in case you don’t want to read on 🙂

I noticed my right breast felt different, heavy, swollen, burning inside and I had strange pock mark spots on it.
I’ll be honest and say I thought it was a group of black heads, so I scrubbed and sudacremed the area for a few days.

But it became larger and constantly burning inside, so I did a arm up breast check.

I found a lump just under my nipple area, and for a second panic set in.. Then I breathed, and reminded myself about 6 years back I’d had the same thing, went for a scan and boost and it turned out to be fibroids. Much to my and my families relief!

I made an appointment to speak to the doctor at the end of the week, and in the meantime I started to get quite a tempreture, and feeling like I had flu without the phlegm.
My body became even weaker and symptoms through the roof.

I had a friend visit briefly on  Wednesday, very rare I see anyone but family, and he was so shocked and upset at how I looked that I felt guilty for it! Silly I know but, I do tend to feel that when Im scaring people with how I am.

I guessed, with the flu symptoms that I had an infection, and when I spoke to the doctor he confirmed it sounded like I have a breast infection, masitis. Unusual for un pregnant or breast feeding women, but possible.
So I’m on a mixture of antibiotics and penicillin for a week. To call if it hadn’t gone by then.

I had to laugh, only I could get something else so unusual and that again could take longer to heal and get better from. Because we all know how crap our immune systems are at fighting anything off.

So now Im weaker, in more
Pain and discomfort than ever and have a right breast the size of a balloon!

Any kind of infection or even cold can whack a persons body to high alert when you have chronic illnesses.
Everything has escalated and I feel like the walking dead.

On top of my declining health its causing physical and mental difficulties. That even when the infection is gone its going to take ages to get back on my already broken feet and health.

I can rarely make a cup of tea or bathroom trip without payback, which is incredibly hard to grasp mentally. Let alone physically.

My body is so weak, so in pain and with constant seizing burning aching throbbing muscles.

Yet I can’t sleep because the symptoms are so severe, and 24/48  hours is a long time to be awake unwell and trapped in your own body.

And that’s what it feels like, that I’m trapped in a body that doesn’t work, and a mind going from thinking too much to not being able to grasp the concept of simple acts, such as how to brush my hair.

I prefer the times I can’t think, because at least then I’m not facing the thoughts of, is this is for the rest of my life? If I continue to get worse what is going to happen? How am I going to keep going day after day after day like this forever? And will I be able to?

It helps that I am quite a positive person, that I tend to think of the good in my life and what I have and not what I don’t.

But I do have times when I am thinking about the things mentioned above, and no amount of positive thinking quells them.

And maybe, I need to think like that sometimes. Because it is reality, it is how I feel at that moment, and they’re viable and true thoughts to have.

Pretending otherwise is just lying, and when I started this blog it was to be honest, no matter what was going on.

I am hoping this infection clears up soon and doesn’t leave me more debilitated pyschially than before, that I will come out of it and have no paybacks.

And that my breast will go down and stop making me look like I’ve had a very bad lopsided boob job! 

But no matter what happens, I am forever greatful for my family who have cared for me, looked out for and after me both physically and mentally these last weeks. I truly don’t know how I would manage without them, and their constant support.

I may not be rich in health or wealth, but I have a family that money or prestige could never buy or achieve.

🙂

Cyber bullying within the chronic illness community

I have recently become aware of how bullying by chronic illness sufferers towards other sufferers is sneaking into social media, sites, and groups.

It is disgusting that this is happening. I wrote a past blog quite a while ago, sbout how competition of who is the sickest happens quite a bit on support groups, and that is mind boggling enough. But to target someone who is battling their own illnesses 24/7 along with their lives, families, home, appointments and medical frustrations?

There is something very very wrong with that.

It is difficult enough to wake most days and find the strength, courage and mental strength to get through it without being harassed and or criticised by someone over social media.

The same places that we go to for fellow understanding, support, talk honestly and to feel we fit into this new life and body our illnesses have thrown at us.

But some people, seem to be creeping onto these social media sites and support sites to not only criticise, hurt, anger and damage people but also challenge their claim of being sick.

Really?

What gives someone the right to feel that this is OK to do?
To feel they’re justified in doing so and not feel one ounce of wrong in what they are doing?

Being chronically ill is quite frankly very difficult to live with day in day out. From the moment you wake until you sleep, which is interrupted by symptoms, it is a constant battle of strength, determination and mental stability.

You wake in pain, cramps, in mobility, aching so badly you just want to fall back into your dreams where you have some kind of peace.

You wake and have responsibilities whether you can manage them or not. Some children, some work, caring for others, housework, shopping, cooking cleaning. School runs, washing clothes, yourself, and on top of all these things or some, you have to take care of yourself too.

Remember to take your Meds, rest, pace, Drs and hospital appointments, prescription pick ups or sorting. The list is endless. An able bodied person can struggle with this, let alone someone who is chronically sick.

Add on top of the the tremendous guilt you can feel because you are sick, that these chores and or responsibilities are now too much for your body to cope with.

The mental strength to keep going, just for yourself and try to stay up beat and put on a smiley face for others so they don’t see the pain you are in bodily and mentally.

That they don’t see or hear your sobs late at night, when you wake or during the day because you don’t know how much longer you can keep up the farce or what you are able to do physically.

I myself have had terrible times of anguish, that I feel a huge burden on others because I need so much help from others now. That I can rarely get out of bed, and when I do the pain and pressure on my body makes me want to scream.

Scream out of pure frustration, anger, loss of life, mourning my previous life. The mother, daughter, sister, partner, friend and person I was. Scream because I don’t know how much longer I can keep doing this day after day, waking each morning in agony and sometimes I just don’t know how I’m going to get through the day.

Through social media, a whole new life is there for us chronically ill. A network of support, love, encouragement, tips, friendship, and to actually feel we can fit in there now we really don’t in ‘real life’

I myself have not personally been cyber bullied, I’m lucky enough that the people I interact with are lovely, all you could hope for. And I try to be as much as a support, friend to them. I appreciate more than any words could say how the chronically ill opened up their arms to me when i first stumbled upon sicial media sites, and welcome and helped me so much I cried through sheer happy astonishment.

So to find out that cyber bullies are trying to put their foot into this amazing support system makes me furious!

We are supposed to be here for eachother, help, guide, support and create laughter and happiness between ourselves.
To feel we can be open and honest about our illnesses, despair, dreams and hopes.

To feel we can trust and give that and our own lives to others.

But to bully someone who is struggling both mentally and physically every day is sick.

Sick to torment someone who trusted them, and shared their lives with.

Trusted with their inner doubts, demons. Their lives with their family, partners friends.

Any kind of loss of trust is crushing, but when it comes from someone who is sick and know what it’s like to live like we do… well, it can be destroying.

To anyone that is cyber bullying in our strong, supportive, loving and life line community I say this..

That person you bullied may already be suicidal, and you could be the one who pushes that edge to them.

That person is fighting battles you know nothing about, personal demons and daily hardship.

That person may be trying their best to be strong for others, trying to cope with daily illness, events, and so unhappy and overwhelmed all the needed was a kind words or empathy.

That person is a person. A human being. Someone important to many, even if not to you.

I’d say how childish bullying is, but children grow up and learn that it’s wrong.
Whereas you, you are not only grown but on some level gaining self amusement, power and importance.

If you need to bully someone to make yourself feel bigger, better and self important than I suggest you get a therapist or professional help.

You are not anyone’s judge or jury.
You do not get to choose who to destroy on a whim.
Someone’s feeling, health, self, are not yours to play with.
Their lives are not decided by you, your taunts or own inner demons you are projecting onto that person.

You are not in control, you are not powerful, important, perfect or better than anyone.

Get away from your cauldron, the gaggle of sad pathetic witch group you are in and put your broomstick down.

Behave like an adult, as a human in a chronic world of people who were most likely there when you first needed it.

You won’t destroy our community, our support, help, friendships or interactions.
Because we will and do band together to keep bullies such as yourselve well away. You won’t destroy all we have built up between us.

You’ll only destroy yourself.

 

ME and Fibro awareness

If like me, you are one of the lucky people that suffer with both ME and Fibromyalgia ( insert sarcasm here) then this month’s awareness is important.

Both of these conditions are neither treated properly or given the awareness they should. And as a person who suffers with both or either, it’s beyond frustrating, maddening and incredulous.

When I was first diagnosed with ME and Fibromyalgia, on the same day at an ME clinic, I was given one booklet on Fibro, told there was no cure or real treatment for either and medications were hit and miss.
I will always remember asking what the possibility of ending up in a wheelchair was? At that time I was walking but it was getting harder and harder.
But as i had read up on it before the diagnosis because my dr had told me i almost certainly had ME, and there were actually two young women in wheelchairs in the waiting room I suddenly felt a rush of apprehension. The specialist assured me that I wouldn’t so don’t worry about that.

Six months later I was totally bed and housebound unable to walk more than a few steps and before the end of the year… yup, I had a wheelchair.

ME and Fibromyalgia share many symptoms, and are often confused with which one you have or if it’s the same illness.

They’re not the same, and while they do share similar symptoms the neurological issues ME patients suffer can usually tell the difference. But often the symptoms clash and roll around  inside you so much that you can’t always tell which is even more confusing and exhausting.

I used to constantly explain a symptom I was having with ” oh I’m spasming, that’s the ME.” Or “I’m in severe pain, that’s Fibro”

I drove myself crazy trying to constantly separate the symptoms into the right condition but that very soon became increasingly difficult to do.

Now I just take the symptoms as just that, symptoms and don’t separate them often because quite frankly it no longer matter which conditions causing the symptoms, just how I can possibly ease it.

My body’s symptoms, simply now run my body. I am no longer in control of what my body will do at any moment, and that is extremely difficult to accept.

I take the day minute by minute, as I am now so severe going hour by hour as I used to just doesn’t work.

The reality of living with ME and Fibro is quite basically, it sucks.

It sucks your health way from you, the life you knew, the people you thought would always be there.
It sucks your whole world away, and in return spits out this confusion of a new body, life and health that you have no manual or idea of how to even begin to put together.

Chronic illness is just that, chronic. It’s constant, it’s always there and for us unfortunate ones it becomes worse over time.

There’s no cure, no real medications that help because there isn’t enough funding for it or trials to try to figure out why it happens let alone how to treat it.

An estimated 7 million people in the world  live with ME and 200-400 million have Fibromyalgia.

Recently Fibromyalgia has finally started to be recognised and medically accepted as the worst chronic pain condition ever. Fibromyalgia is now being listed as a disability and that is brilliant and relieving news to us who have lived with the “it’s in your head” stigma for many many many years.

But ME? Well, it is often labeled under CFS (wrongly) and still mostly seen as a psychological illness that a traumatic event caused.

This notion is as ridiculous as we get to choose our own sex in the womb.

And I tell you, if I was going to psychologically think myself into anything it certainly wouldn’t be something that has not only destroyed my body but also my life.

I think I’d psych myself into something beneficial, such as not growing body hair to avoid life long shaving or mutating myself into an x men style mutant so that my body could actually be better and more beneficial than before.

I hope that one day soon, very soon that ME will also be classed as a real illness and that it will be given the respect, treatment, funding and awareness it deserves.

That us suffering from ME or Fibro will have a chance to begin to become well again, even if just better than we are now.

I’m not expecting cures, there are so many illnesses out there that are massively medically acknowledged, that still cannot be cured.

But what I truly hope, hold on to and pray for is some help for us, for better quality of life. To be taken seriously and respected when speaking about our conditions. And not treated or disbelieved about how serious these conditions are.

And finally that it isn’t just the people suffering with such conditions that are the only ones campaigning and fighting for awareness or proper help.

To look up on the Internet how others cope, medications thy my help, support groups, social media groups to join to help us not only try to understand how to help ourselves but talk amongst other people going through exactly the same things.

It’s ludicrous that we, who are so sick are the ones mostly raising awareness and trying to get the help we need.

Us bedbound, pain ridden, wheelchair users in chronic 24/7 symptoms are the ones fighting for ourselves.

That is the saddess most unbelievable thing of all.

Busy body

I mentioned in my last blog about the new constant symptoms of pins and needles in my legs and ‘dead legs’. 

Well it became worse and in every part of my body, then came electric shocks running through me too and severe body cramping and of my hands. So much so my hands were freezing into claws that I couldn’t unbend. 

With much reluctance I called my dr and had a phone consultantation, usual for me and I’m lucky my surgery will do this. 

I explained my symptoms and also my pain levels were through the roof. The dr wanted to see me asap for a check up and blood tests. They didn’t have enough staff to be able to send a nurse out which I totally understood. In these days of our striking doctors that were happening that week. He explained that I could take as long as I needed, due to understanding how any travel will impact on me. I had anytime between them 11am and 6.30pm when the surgery closed to get there and id be seen. 

So my ever supportive and super man father bundled me in my wheelchair, got a taxi and I got to my surgery. 

I saw a locum, and I did feel sorry for the guy. Very obviously young and newly qualified I don’t think he was prepared for me or my body reactions. 

He was squeezing my legs, me sat in my chair, which I couldn’t feel and then asked if he could lift one. I warned him that my leg was likely going to jump but when he lifted it suddenly my legs went crazy and shuddered jolted which lifted my other leg up and through my back jolted me in my chair. 

His face was a picture as he quickly let go and said he was not going to attempt that again! :,) 

He said it’s obvious someone is very wrong and sent me next door for full bloods. 

The nurse was lovely and I was there and back within an hour which was great. 

The journey knocked me on my back for three days, and I was very poorly due to the payback of the trip. 

Two days later a voicemail popped up on my phone,  I hadn’t realised I had a message as my mobile is playing up. It was from the dr saying they needed to talk to me about my blood results. I knew that it taking less than 24 hours to get back to me wasn’t a good sign. 

Turns out I’m very low on folic acid and have folic acid deficiency anemia, and high muscle markers. 

Which explains the symptoms I’ve been having. 

So they put me on folic acid and I had to go back to the surgery that day for a more I depth blood take on the muscle and inflammation results.  

I felt like a pin cushion! 

And you know you look and are sick when even the nurse, receptionists and Drs say oh I do hope you get better soon in a quiet and downcast way. Yup, I must’ve looked as awful as I felt! Haha 

In between this I recieved a letter from PIP saying they were visiting less than a week a away for an assessment on my disability money. 

I had filled out the forms in January, and had a reply back in March that all was fine and my money would stay at the same rate. So I was very confused about the up coming visit. 

I called them and was told that although my claim doesn’t end until January I need to be reassessed 10 moths to a year before my claim needed reassessing when my claim ended in January 2017.. Yup work that one out! 

So in between these blood tests, Drs surgery, result waiting and feeling like hell frozen I had my pip assessment. 

I had to sort all my paperwork and have it all photo copied to give to the assessor, as the woman on the phone explained “anything that will prove you’re sick” 

Which of course wound me up because 1, I hate having to prove anything to someone who neither knows me or understands my medical issues. And 2, I can assure you I have no desire to fake living the way I do to gain money. I wish it wasn’t real and I was living a life instead of this existence! 

The assessor saw me in my bedroom as I couldn’t get out of bed, she seemed nice enough though, but this is Atos and if you have heard of the horror stories about their assessment you can imagine how concerned I am that I could lose my money. The money I need to eat, travel, pay bills, rent, home adaptions, pay for equiptment to try and make my body cope better. 

In a way it’s lucky I am so sick right now because you can very blatantly tell, every body movement makes me winch, muscles cramp and seize and cause incredible whole body pain. Plus the fact I can barely walk, I think she believed I’m not faking illness. 

Well fingers crossed she believed! 

I have to wait 6-8 weeks for their decision and I’m going to be on tender hooks until then. 

The next week I had my final results through from the Drs and it shows that all my muscles and tissues are massively inflamed and there is no reason why they should be. 

So after discussing this with my dr she has referred me back to rheumatology for scans, x Ray’s, bloods and check up to see why this is happening. 

Every blood test I’ve had for two years has shown high inflammation but it had always been attributed to me having a virus, sinus infections, bronchitis, sepsis, lung infection. But the other tests shows I have no virus so these past assumptions have been wrong and I need to be seen ASAP. 

I have deteriorated badly in the last month. Knowing this is one thing but being told by a doctor is something else. Strangely being told did effect me, maybe because it had been spoken aloud and once said it becomes real.

I can barely move without major repacussions, do anything with out massive payback lasting days or weeks. 

Sleep is so little because the pain is too high and my muscles will cramp and hurt so badly that there is no respite from it. 
This week I again had to call the Dr as my muscles were locking and wouldn’t straighten out and I’m now on high diazapam to try and ease this.

I am sick and tired of being constantly this sick and tired. 

But, hopefully the rheumatologist can help in some way and I can begin to improve instead of this constant downward spiral in health and body function. 

There’s always hope, always. And the future is full of endless possibilities of brighter and happier times. I am very willing to hold onto this and it’s eventual benefits I will feel 

🙂 

Power chair a go go

So, after nearly two years in a wheelchair for anything that requires more than a few minutes walk, I am now unable to walk that far or self propel myself in my wheelchair at all. After much deliberation, thought and self searching, I am now in the process of buying an electric power chair. 

The self searching was a surprise to me, I didn’t realise I had, or would have such a big issue with admitting that I could no longer manage my self propel wheelchair, or the fact my mobility has become so bad that I need a power chair. 

Not because of what others will think, that I’ll be stared at, judged or whispered about. I’ve been through all that when I first started using my wheelchair, the stares I still get from people can be surprising..

 “Yes, I’m a young (ish) woman in a wheelchair, no it’s not unusual and yes I will stare right back at you until you look away in embarrassment!” 

It has been my own acceptance I struggled with, my own realisation that it has to be the next step for me, because my mobility has become so bad I can no longer rely on my own legs or body. 

I know my mobility is bad and has been deteriorating for a year. I deal everyday with the issues my lack of movement, severe cramp and pain, feeling of limbs and discomfort my legs cause me. 

That any kind of walking is now causing such ramifications,  the sheer effort it takes and back lash of weeks is not worth it. 

And my balance, well let’s just say I can no longer even stand without swaying. I’m covered in bruises from continuous bumping into things because I’m so tottery on my feet. 

But still, that tiny little voice deep down in my brain was whispering “do you really need it Stace? You could get better, you can still walk a few steps, you can cope, you can put up with the backlash, don’t give up, don’t give up”

But, I now fully accept that it’s not ‘giving up’ it’s not worth the backlash and it’s definetly going to improve my life and health massively. 

For the last week and a half, I have lost complete feeling in my legs from the knees down. All I could feel were pins and needles. From the knee up my legs were in constant vice like cramp, spreading to my hips and back. 

Have you ever tried walking with pins and needles? It’s a nightmare, I can not feel the floor or feel my feet on it. 

With the cramping combined it has quite literally laid me up in bed unable to function. 

It’s the longest I have had this for, I regularly lose the use of my legs, arms for a few days but a week and a half and still going? 

No. 

I knew that wasn’t right, ‘normal’ or good no matter how much I pretended it was ok. 

I have had to fully accept that my health is still deteriorating, that when I can no longer go a day without crippling pain or proper movement in my body and limbs, I need to do something to help my body. 

It’s not about what you can’t do, it’s what you can. 

That’s my fathers line, and I carry it with me everyday in mantra. 

So I can no longer walk, stand, move without great effort, pain and crippling cramps. But what I can do is find something that will help me move. That will ease the effects walking etc has on me. That will give me a better quality of life, to enable me to live and be and mobile. Not bedbound everyday because I can’t walk, not housebound because I can’t walk. 

I can do something to help myself, my body and my life. 

So, with help from my brilliant, loving, and forever supportive and understanding family I have fully accepted my next step (ironically) is a power chair.

My family are all putting towards it financially with my savings and I am so fortunate, I couldn’t do it without their help. 

I’ve chosen a power chair because it’s easier to use, smaller to manouvere in my bedroom and able to take apart to transport. 

I will need to practice how to use it, I don’t drive and couldn’t even drive bumper cars when I used to go to fairs! 

I will get a horn so in case I do lose total control of the chair, I can beep loudly to help others jump out the way to safety.. 🙂 

And most importantly, now I have accepted I need a power chair, fought and beaten my inner fears and doubts, my mobiliy will improve and the stress walking causes on my body will be minut, life can only get better. Life and it’s possibilities will be more open to explore. 

And I am so very ready to explore and experience it. 

🙂 

Forgetting your disability

It may seem strange after over two years of serious disabilitating affects on my body making me virtually bed and house bound, that there are still moments when I can forgot that I am now this disabled.  

Honestly even to myself this seems ridiculous, how can you forget? When you live 24/7 with symptoms, a limited routine and even life how is it even possible? 

But it is, to my own astonishment I still have moments where I can instantly go to do something, pick something heavy up, bend down to put something away or look at something, or do something that is going to cause massive reprecussions on my body. 

An example of this happened a couple of weeks ago. 

I was in the kitchen and I couldn’t reach an item in the back of the bottom food cupboard. I became frustrated, I was tired as I hadn’t slept due to pain and muscle spasms all night.  And in the midst of this frustration and muttering, I knelt and sat on the floor. 

Huge mistake! 

Once on the floor I realised what a big mistake I had made, because I couldn’t get back up! I know never ever to do this, this was actually a problem for a couple of years before I become as sick as I am now. Severe endometriosis gave me a limp due to the pain in my uterus and hip, and bending or sitting down low meant I couldn’t get up properly without a large struggle. I avoided things that meant I had to do this, and my son has helped me up many times over the years before my chronic illnesses kicked in like they have now. 

But here I was, sat on the floor, the tin I couldn’t reach in hand and wondering what the heck I had done and why?

 I truly think it’s instinct. At what point does your years and years of healthy well life and instinct to just do things without thinking kick in? 

I struggled with instinct so much when I first started losing my mobility and body and limb strength. 

I had never had to think about walking, movement, lifting, putting down, moving items before. To get dressed, shower, was my hair, clothes etc.. As a tiny child these things are taught and not thought about after. We see it needs doing and we quite simply do it. 

Life isn’t like that when you’re chronically sick. 

Everything you do becomes an exertion, it takes time, huge effort, pain, to do the simplest of things and you either learn to do things differently and cut down the effect it will have in you and your body, or have to stop doing them as your body can no longer cope. 

In ‘normal’ wellness living, who thinks about brushing their hair? Getting dressed, washing up, doing laundry or popping to the shop? Who thinks about how much that activity is going to hurt you, exhaust you, disable your body for hours or days to come? 

You  don’t think about it, you just do it. 

Thinking about those things seem inconceivable, it’s instinct, years of habit and as natural to us as the air we breathe. 

But now, every thing I do requires thought, pacing, rest, higher disabling of my body and total exhaustion. 

It’s taken a long time for me to learn how to pace, to accept this is how things are now and to try not to get depressed, upset, hurt or angry about it. 

Yet, even now my instinct kicks in over takes my carefully planned paced life and *boom* I find myself in a situation that is going to cause me great remifications. 

Such as finding myself sat in the floor, unable to get up and cursing my own instinct and stupidity. 

Luckily my son was home, I called out to him and even he quiered why I had sat on the floor. I chortled and said ‘darn instinct, stupid brain is trying to kill me’ and he laughed too and helped me up. 

But the worst thing to do is, in those first moments of waking naturally, when you open your eyes the day begins, and forget for those few seconds/minutes that you are disabled. 

It doesn’t happen often now, and I’m glad for this. It kicks in when you go to move, breathe, sit up the struggle it takes to do that. But sometimes, sometimes in those moments of waking , still sleepy and unthinking.. it does happen, and it’s as though you’ve woken disabled for the first time. 

For those moments of realisation it crashes around you and I’m laid there in loss, frustration, how has this happened and how will or can I go on like this for the rest of my life? 

It’s such a weight of loss and despair, of fear for the future, sick of being constantly sick and living an extremely limited life because you’re trapped in a body that can no longer cope with ‘normal’ life and body function. 

Those feelings and weight can last minutes or hours for me. Some days I can quickly brush it off, put it to one side and start my day. Other times, it can stay with me and I struggle with myself, my body and my life now. 

I had 31 years of instinct, of ‘normal’ every day life and body functions. Compared to the over three years of health starting to disable my body, mind and life. 

Will that instinct, of having moments of doing without thinking ever totally leave? Will the come a day I no longer have my brain over take my limitations now and put me in positions that are gong to be a struggle to get out of? 

I have no idea. 

What I do know is, these instinctive times are becoming less and less. New habits, new instincts that stop me doing things that are going to hurt me are forming and this is a good thing for me. 

Far better that my instincts are to spare me difficulties, further health issues and acceptance when I wake, than old instincts that no longer have a place in my body or life. 

Sepsis

It’s been a strange and eventful few weeks. 

It started with a new niggle that was annoying more than anything, but turned out to be extremely serious.

It started as a slight pain in my left rib, under it and I thought ok, I must’ve pulled it or hurt my side without realising so I put deep heat on it and took paracetomal more often. 

It niggled for about four days, and then suddenly it became worse, and had started spasming. I had never had a spasm pain there before but, when you become chronically ill you tend to get used to spasms or aches and pains and don’t take much notice of them. So I continued to put deep heat on it and also a hot water bottle to try to ease it. 

For three days it became progressively worse, and had spread under my left breast, rib and back. Again I was more annoyed than anything, I silently started to curse my ‘stupid body’ and continue to rest, use deep heat, water bottle and re position my electric blanket so it was against my back in bed. 

It was making me totally bedbound, walking was near impossible and the pain was running through body bed limbs like lava. 

Two days later I could’ve move the top half of my body due to the severe cramps and the pain had spread into my chest. So, I decided to call the doctor for diazepam which I use when I seize and cramp badly. This was on the Wednesday, the locum was great and prescribed them but told me to call again if it didn’t ease. 

I was sure it would, and I’d actually sleep for more than the two hours a night I had been getting due to the pain and unable to move without cramping. 

But Friday, I was awake all night and the pain was horrendous. I waited until the surgery opened at 8.30 and called to talk to a dr about advice. What happened next was so unbelievleble and unexpected if I had been in front of said dr, I would’ve waged war in the room and there and then phoned the manager of the surgery. 

Her response to my explanation of widespread crippling pain, cramping, chest pain was that I need to learn to manage my health more.. Without relying on drugs. That it was probably the meds making me iller and there wasn’t much she could do and wouldn’t prescribe me anything because I’m on too much. 

At this point, I tried calmly to explain this is not normal for me, I have never had this before and I was worried, which rarely happens. That I wasn’t calling for drugs but any kind of advice and the previous dr had told me to do so if I got worse. 

She again spoke about drugs, and getting a tens machine and there wasn’t anything she could do. 

I put the phone down. 

One because I was disgusted with her ‘professional’ advice and two because at that point I was in too much pain to talk or function properly. 

I held on for two hours, crippled and in pure agony before phoning my parents to say briefly what was wrong and they called ambulance. 

My father rushed to my place and my son was home. The ambulance crew were lovely, they checked me gave me gas and air then asked if it was ok to take me to my Drs as the queue in a&e was four hours and I needed to be seen now. 

So I said yes of course, and I ended up being taken their in the ambulance. With my father and son.. 

Straight into see the dr I had spoken to that morning. 

To say she wasn’t impressed was an understatement, until she examined me and diagnosed pluersy. 

Now I had noticed purple mottling up my leg and she brushed it off and said it was temperature. Later that mottling would be important. 

But for then, I told her about it wasn’t drug related, I hadn’t wanted more pain meds and that I had cut my meds down if she actually checked my records and how was I meant to control my own health with the conditions I had? Or should I have treated my own pleurisy too? 

She was partly annoyed and partly embarrassed about it and my obvious illnesses and pleurisy. She ordered bloods to be taken and my father would take them to the hospital that night to get them checked urgently. Then prescribed my antibiotics and said she’d phone the bath pain clinic to speed up the re arrangement of my appointment as I was very in need of it.. 

I left relieved I now had a diagnosis and it would ease up in a few days and annoyed that I had to have an ambulance and taken to her when if she’d just listened that morning it could’ve all been avoided. 

I later found out when talking to the paramedic who was telling her I needed to be seen now, she asked if I had a tens machine and the paramedic who was already outraged with my story of that morning, had a go at her ridiculousness. 

So I went home, my father taking me in a taxi in my chair and got to bed hopeful to start feeling better soon. 

Saturday I felt really rough, but knew it would take a few days for the antibiotics to kick in. 

The pain and cramping in my side got worse and worse, I was up all night with it and after researching the symptoms of pleurisy,  wasn’t sure that was what I actually had because I didn’t have many of the symptoms and other symptoms I had that didn’t match. 

Through the night my chest started paining, a dull ache that spread until I was finding it hard to breathe. By the afternoon I became doubled up again in agony, pain I had never ever had that was so bad I couldn’t move, breathe, without tearing through my body and going dizzy. I couldn’t stop sweating , my temperature was burning through me. 

I’ve always said, I can handle pain I’ve been through non drug birth of my son and never thought any pain could or would be that bad again. 

I was very wrong. 

I got to the point I was just a ball of massive agonising pain, dizziness, barely breathing fetal position. 

I had to try 3 times to call my parents as by this point I kept falling in and out of reality. 

All I could get out to my father was, I’m really bad can you call the dr and put the phone down. 

Care direct called me back and I could hardly answer their questions. Within two minutes he said an ambulance is being dispatched and I just put the phone down and drifted off again. 

Within ten mins my room was full of 3 paramedics, my partner and my father. 

To me it seemed impossible for the symptoms to get worse but by the time they came, all I could feel was massive body shaking pain barely breathing and trying my to move because the moment I did, I knew the pain would tear through my side and have me pass out again. 

The paramedics thought I was having a heart attack, and put a valve straight into my arm and  injected morphine and something else into it. I’m not sure what. 

I vaguely remember my father saying ‘she doesn’t like taking strong  meds’ and I replied, “anything anything I don’t care”

The paramedics gave me three doses of morphine before the pain started to ease, I was hooked up to a heart monitor, asked how long is been like this, and asking about the dark red mottled skin all over my legs and arms. 

I was ‘stabilised’ and taken into the ambulance, oxygen up my nose, morphine still being put into me, and me saying “I’ll be ok now, it’s calmed down I can go back home and rest” 

That was not going to happen though and I was put into a&e where there were no beds so I was on the ambulance trolley in the corridor. 

The paramedics were brilliant, they really looked after me, kept apologising about the corridor and one female paramedic stroked  my hair saying “I was still pretty despite how ill I was”

I replied I think she needed to be on this trolley not me if she thought that.. 

I was in and out of awareness, the pain had eased but every so often swept through me and I was doubled up again. 

I was trying to ease my father and partners worries by trying to act ok and making a joke or two but I couldn’t keep it up so just tried to keep awake and control the symptoms as best I could. 

I was in the corridor for hours, I was 5pm ish when I went in and gone 2am when I left. 

The Drs and staff kept apologising As they had to examine me in the corridor just pulling this make shift screen around me. 

But I truly didn’t care, they were all brilliant and took care of me so well that I am so grateful and appreciate of the staff of the BRI hospital that I am mentioning the actual hospital for the first time ever in my blog. 

My father was a porter in a&e there for ten years so we both know a lot of the staff and this did make it a lot easier. I hate going in to hospital, and have avoided it at all costs of the last three years. 

But the care that was shown to me and the other patients in the corridor was so superb they deserve the recognition. In these days of our NHS upheavals and striking of Doctors, I fully support them and hope the conditions they work under are massively changed for the good. They deserve it. 

After an hour I was diagnosed with an infection in my lower left lung/pluersy and Sepsis. 

Sepsis? I had no idea what it was, let alone how I had it! 

Basically Sepsis is caused by your body’s response to an infection. The bodies immune system goes into overdrive, setting off a series of reactions including widespread inflammation, swelling and blood clotting. This can lead to a big decrease in blood pressure, which can mean the blood supply to vital organs like the brain, heart and kidneys is reduced. 

The infection in my lung was what triggered Sepsis. 

If it’s not treated quickly it can eventually lead to multiple organ failure and death. 

So it’s very serious and the symptoms can mimic a virus at first and go undetected until it develops, which happens very quickly and needs to be diagnosed and treated very quickly. 

Which is why my breathing dropped, I was so sick so quickly and the mottling of my skin I had noticed and the Doctor at the surgery had dismissed was extremely important. 

She should have, if not recognised the mottling at least of examined it and checked for causes instead of dismissing it so causaully. 

The doctor at the hospital said I was extremely lucky, another few hours and it could’ve  be been touch and go and me in icu. 

I am never ever dealing with that particular doctor at my surgery again, and I am yet to decide if I should put in a complaint to the manager at the surgery as suggested by hospital staff. 

And that’s the thing with having chronic conditions, we can often not get the medical treatment we need due to 1, us thinking it’s just our conditions playing up and 2, having ‘professionals’dismiss it as  such and putting every or any new symptom onto being chronically sick. 

I was so very lucky to have been diagnosed in hospital so quickly treated so well and given a massive dose of antibiotics and penicillin into my arm valve. 

I’m very lucky that I am still here to be telling you about this experience. 

It’s been three weeks since that hospital dash and I am still pretty sick. My other conditions decided to join in the party and on top of the sepsis and lung infection, have absolutely floored me. 

I can’t get up and go to the bathroom without it causing total exhaustion, pain, dizziness and muscle spasms. 

My body is in constant crashing mode and it could take me many many weeks to get to my usual level of wellness. Which isn’t particularly well anyway, but boy do I wish I was even that well again at the moment. Any improvement at the moment would be gratefully accepted and clung to. 
The first weeks antibiotics and penicillin didn’t clear the infections nor the second weeks I had from my doctor as it hasn’t cleared in that week. 

I had a dr visit me this week as I am still unwell and having symptoms. She thought I might have a clot on my lug so took bloods and had them sent to the hospital straight away. 

The dr called me in the evening to check on me and hand me over at 7pm to the on call dr who would phone me as soon as my results came through. It was an anxious waiting time for myself family and partner as I would’ve been taken straight to hospital. 

At 8pm the results came through and I didn’t have a clot, thank goodness! 

I had to wait until the next afternoon for the rest of the results, they showed I still had slight infections but the dr has suggested that we see if it will clear up itself before given more penicillin and antibiotics as they could actually block the infections if I’m on them for too long. 

It will take me weeks or months to get over this fully, due to my other conditions, and I need to take extra care, be cared for, do nothing that will put extra strain on my body total rest and if I feel worse or the symptoms escalate call 111 straight away. 

I will eventually be clear of the infections but I urge you to please check for Sepsis if you are showing any symptoms of it. 

Not just us with chronic illnesses but anyone who is showing symptoms of 

High temperature 

Chills and sweating 

Fast heartbeat 

Fast breathing

Feeling dizzy or faint 

Confusion or disorientation

Nausea and/or vomiting 

Diarriah 

Cold, clammy and pale or mottled skin. 

I had all of these symptoms, yet it was still missed at first. 

And I think without the massive pain that my lung infection/pluerisy was giving me, brought on more so by the sepsis, I could’ve continued to blame it on a virus or my conditions. 

So please keep in mind the Sepsis symptoms if you’re feeling unwell and anything unusual is happening aside from any other ailments you may have. Please get yourself checked out and mention Sepsis to a health professional. 

You’re not wasting their time, your time or risking waiting to see how you feel the next day incase it’s nothing. 

It’s better to be safe than sorry and be here to tell the tale of your experience, than to be unable to tell anything ever again. 

I am extremely lucky and grateful for my family and partners support and care, and friends, who though few in number, have been here for me every step of this experience. 

I am truly blessed to have such love and support in my life. 

As bad as it was and is for me right now, I am and will also be forever grateful that I am here to be able to tell you guys my story, in the hope it could help save some one else from the same experience and what warning signs to look out for. 

Take care of yourself and others

🙂 

New Year new hope

I had a lovely Christmas and New Year.

It was my sons 21st Birthday a few days before Christmas, 21st!

Wow it made me feel old and genuinely wonder how quickly the years have gone by. 

But I am extremely proud of the man my son has become, and unbiasedly know that he is a man who will do well in life, because he works his tail off now in order to achieve his dreams. 

He is, and always will be the best thing that has happened in my life. 

I was able to go to my parents and have Christmas lunch and on Boxing Day spend time with my brothers, neices and nephews and my brothers lovely wife 🙂 

Amidst the talking, joking around ( because all of us are jokers and cheeky remarkers) and eating I had a moment of feeling like the old me. I stopped and felt so much like me that it was scary but so exhilarating! 

I haven’t felt like that in a very long time, haven’t felt ‘normal’. But with my family, I felt so happy to be there, to see them all and able to join in that I forgot that I am actually sick. 

To be able to talk to my older neices and nephew and see how grown up the eldest neice is becoming, and how clever and cheeky my older nephew is and the spit of my brother! 

I felt like the old me, carefree, happy, jokey, and being silly with my young nephew as I played with his Star Wars figures and discussing how if a ghost tried to drink water it would go through its body, and that zombies eat brains, but not mine because it’s too small.. :,) 

It was good to feel that way, good to actually feel I am still me, that I am still me inside myself and to let that out.. Felt incredibly freeing 🙂 

I felt greatful for the amazing family I have, felt greatful that I could manage to see them, and feel grateful for the genuine love and support we all give to one another no matter what. 

Yes, I am still very ill. Yes, my mobility is so bad now that I lose the use of my legs in a weekly basis. Yes, I am still mostly bed and housebound.

But.

But, it’s the special moments like that which make me feel fortunate for what I do have, regardless of what I don’t. 

That despite how sick I am, I know that I have far more good things in my life than I don’t have. 

That many would love to swap places with me, and experience the love, support, and care of a family. To have a roof over their heads, a child and security. 

To know that despite how bad things can be, I am never truly alone and never will be. 

That, is worth far far more than what I don’t have health wise, and always will be no matter what the future brings. 

🙂 

Crashing Christmas

It’s been a difficult few weeks, well, couple of months to be totally honest. 

I had a massive crash 6 weeks ago, I had lost the use of my left arm and shoulder again and my body was in constant spasm. 

Then I got up in the night to go to the bathroom, and my legs felt like jelly, and really shakey. 

I managed to get to the bathroom, and then back to my room.. Despite the now tingling all through my legs and back. I shut my bedroom door stepped forward and ‘bam’ I went down like a large bag of potatoes! 

I had lost total feeling from my waist down and couldn’t move that area at all. 

I will admit, it was very scary. I don’t often feel scared about my symptoms but this, this was a massive shock and with only my right arm working I felt real fear. 

I was slouched on the floor for an hour, slowly inching my way to my bed by pulling myself with my right hand. 

When I got into bed, I was absolutely exhausted. I reached for a drink and my pain meds and diazepam and tried to relax my body as much as possible. 

About 4am I text my mum to ask if she was up, and she was as she’s a very early riser. I chatted to her on the ‘phone about what was going on and made arrangements to get to her house so I could be cared for until it passed or eased off. 

I was there for two weeks, and I slowly got my legs back to walk. I was cared for so well by my parents and sister, and I am and always will be incredible greatful for them and their total support, help and love. 

Since then I am losing the use of my legs on and off and the spasms, pain  and cramps are in overdrive. 

This flare and relapse has put me back months, I’m much better than I was but my body is screaming at me 24/7 and I feel these symptoms, the loss of feelings in my legs is going to become a part of my illness, as all my other new relapse symptoms have. 

So again, I’ve had to put more measures in place to help me through this and seriously think about my future. Like moving and getting an electric wheelchair after I do so I can not stretch and lose the use of my arms by using my self propelling one. And keeping my mobile with me at all times in case the feeling in my lower body disappears again. 

And with Christmas and my sons birthday just around the corner, I’ve been focusing on getting better so I can enjoy and take part of the day. For my sons birthday rather than Christmas. 

I find this time of year can be very depressing when on social media. All the pictures of Christmas parties, social events, tree and decorated homes. 

Don’t get me wrong, I’m happy they are happy and can do these things. But I will admit that it makes me feel left out, look to the past when I was well and did join in with all these things. 

I’ve only just got into the Christmas spirit, and my son hughly contributed to this by encouraging us to put the tree up together. 

That was a beautiful time, spending that time together,  I loved it and I’m glad we put it up as it does make a huge difference and creates a Christmas air 🙂 

I think that many people who are unwell struggle more at Christmas time because there is so much to do, but you’re unable to do much or any of it. The pressure is huge and others can forget you are sick and assume you will sort a lot, which causes huge strain for our bodies and minds. 

We don’t suddenly become well because it’s Christmas, although I would love that Christmas miracle! 

It’s a day that pushes our bodies to the limit and causes huge recupusions, including  severe flares and relapses. 

I know I have to be extremely careful and not push myself between now and Christmas, because darn am I missing out on my sons birthday and then Christmas Day! 

Pace, pace, pace, pace.. Will be my constant repetitive motto, and being sensible and good for once! 🙂