Dear “Norms”

The post that was prepared last week and had to be replaced by an old blog post at the last minute, is again sat waiting to be edited and polished. I have now managed to come down with a UTI that has zapped all the energy I never had anyway! So apologies but I have had to re blog Dear “Norms” from last year. This got an excellent response on social media and I wanted to thank everyone who shared their experiences.

 

Dear “Norms”

Sorry I have addressed you as “Norms” it short for normals as I believe that is what you consider yourself to be? I mean you don’t have any chronic illness or mobility issues, so you consider yourselves to be normal but what exactly is that? It isn’t meant to be derogatory and I know you are trying to be politically correct when you describe me as disabled. It’s just I am at a loss as to what I am supposed to refer to as. Using the term able-bodied puts me at the same disadvantage as calling you norms. So perhaps just for once we are equals. We equally despair of the names we use to refer to each other.


Labels for either of us really aren’t helpful and build up feelings of resentment on both sides.

Norms have so many labels for people like me that you don’t consider “normal” such as spaz, cripple, deformed, freak, gimp, invalid, handicapped (for those of you who don’t realise that the times have changed) and the one that is the nom de jour disabled. More examples of the awful words people use to describe us can be found here . All words used to describe me and those of my community have negative implications and are frequently used by norms as a throwaway term of abuse.

I hate the term disabled as it automatically puts me at a disadvantage. For a lot of “norms” it automatically means I am incapable of doing anything for myself or having an equal role in society. Those who think they are being politically correct refer to themselves as able-bodied but my fellow “sickies” and I are considered disabled. 

 There is no name for which we can describe our status without it having negative connotations. From the on-line dictionary “dis” in front of a word originally comes from Latin (who knew? blogging can be quite an educational experience) and is used to turn a word into a negative  e.g. dismissive, disadvantaged, disappointed, disappear,disenfranchised, disbelief and my absolute favourite disabled. 

We really need to work together to remove this stigma attached to people like me and come up with a term that is less negative and more realistic. Until that time though, I would prefer it if you just referred to us by our names instead of our perceived disabilities.

Nothing drives home my difference from you norms than being out and about in public. I have a couple of chronic health conditions that affect my mobility they do not affect my intellect yet  some of you seem to assume it does. That irks me somewhat. I don’t assume things about your intellect just by looking at you. I have to ask who gave you these special powers and why don’t I have them? Why does the sight of a wheelchair send you into such a frenzy of uncomfortableness? Just treat me the same way as you would anyone else. My wheelchair  is just a mode of transport, I don’t need an interpreter so stop talking to the person pushing it instead of me. I just want to be treated like a “norm” why is that so difficult?

This inability to communicate with people like me affects all different norms including those in the medical profession, people who should really know better. Some of my most disappointing and humiliating interactions have been with those in this field. Despite holding a conversation with me moments earlier, as soon as my husband enters the room all of your questions will be directed to him. Which is really stupid as my husband could probably name one or two of the medications I am on but not the other 15. Nor could he tell you what my main difficulties are firstly because they change from day-to-day and secondly I like a clear divide between his role as my husband and that of a carer. Its become so bad of late I have started attending medical appointments alone wherever possible. I have had to change my behaviour to force you into changing yours. Would norms have to go to medical appointments unsupported by their spouses / partners just to be treated like a human being?

There are lots of things that irritate me that norms do without realising the impact of your actions. Believe me I think your motivation comes from a good place on the whole and not out of ignorance. My letter to you is just challenging you to think a bit more about how you treat people like me. I know that the majority of you would never deliberately suppress another human beings rights. All I am asking for is to be treated like an equal and not a lesser being or a thing of pity.

On social media over the last 12 months or so there have been lots of memes posted that picture disabled (what else can I call us?) people as figures of inspiration. In our circles these memes are known as disability porn. I am sure when you post them that you have no idea how most people with a disability react when they see them, most of us spontaneously combust with rage. Let me be clear I have no problem with people trying to raise disability awareness that’s not the issue here. What I have an issue with are the memes designed to show “you” how we have such wonderfully positive attitudes and we never let anything get in our way…..bullshit! There are lots of things that get in my way badly designed ramps, narrow doorways, inconsiderately parked cars and steps, just to name a few. I don’t always have a positive attitude some days like the rest of the human race I get the blues, hell I have even been clinically depressed. So don’t use us as your inspirational memes it dehumanises us and sets us apart from the rest of you. If you are interested there is an excellent talk by Stella Young here, explaining what is wrong with disabled people being used to inspire you.

I am curious to know as well why a different set rules for the use of social media apply to you. When you are sick with a cold / sore throat / chest infection etc you are allowed to post about it for days on end. You are allowed to let everyone know how sick you are. Yet if I post any details about my condition I receive messages saying that I am being negative, it’s depressing you or that my life really can’t be that bad, after all I don’t have to “force” myself into work whilst ill ( you seem to find it easy to forget that I did force myself into work for 18 months before I was medically retired by the company I worked for which at the age of 34 was no easy feat). I got so fed up by these messages from so-called friends I removed you from my social media streams and then set up a page linked to my blog so that I could post there free from criticism.

I have days where I am in pain, feel awful etc but I am not allowed to express myself on social media as you would. You negate my suffering by forcing me to self censor rather than face the backlash. Why is my suffering not as worthy as yours? I am not alone in the disabled community when feeling that we can not be honest when expressing how we feel. We have learnt the hard way that to speak freely means social exclusion. It seems that you norms are only prepared to accept the sanitised version of health problems. As S. Kelley Harrell said

 “Miraculously recover or die. That’s the extent of our cultural bandwidth for chronic illness.”

I think she hit the nail on the head with that statement. We don’t as a culture seem to be able to understand that many diseases / conditions are treatable but not curable. Which means that many people will live with a progressive/non progressive condition for the rest of their lives. 

Lots of norms casually say to me in that if they became disabled they wouldn’t be able to cope or would kill themselves. They say they don’t know how I do it. I do it because there is no other choice and I don’t feel that my life has become less due to the chronic health conditions I face.

This post is not about us and them, it’s about striving to be equal and not less. I am not anti-norm I used to be one. Until it happened to me I gave no thought about the words I used or the actions I took and how they could detrimentally affect those with a disability. I never gave a second thought about disabled access and how 9 times out of 10 its pretty ill-conceived. I want to be included in the world, not your world our world.


Thanks for reading my letter to you, I hope it inspires you to change the way you think about the 16% of us of working age that are “disabled” in the UK.


Rachel

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Weathering the storm – keeping a relationship strong

Currently I am too sick to come up with a new post this week, so rather than just apologise (one of many) I thought I would re-blog this post from May 2014. It seems quite apt at the moment as all I seem to do is apologise to my husband for taking to my bed and being unable to spend any time with him. We both know that there are better days ahead and we focus on the future rather than the here and now.

Chronic illness / disability can and does destroy relationships. Suddenly the husband / wife / partner moves from the role they assumed when you got together to one of carer and in my case he also became the bread winner. That kind of stress can blow apart even the strongest of unions. With so little support available to those that take on the role of carer its no wonder so many of them end up with mental health issues such as anxiety or depression.


Families can be supportive or can completely distance themselves and provide no support at all for the couple whose lives have been so dramatically changed. Families can be a destructive force, doubting that the person is even sick or minimising the extent to which the disability affects them. They can also be instrumental in the break up of a relationship, by telling the carer to leave / divorce the person who has become sick, so that they can resume a “normal life”. Whilst some partners may jump at that perceived lifeline, those that don’t find their relationship with those who offered it fractured beyond repair. The anger caused by this “helpful” offer bubbles away under the surface and only serves to increase the burden already placed upon them in their new role. When your family withdraws support from you due to a spouses / partners sickness it just adds to the isolation that is already acutely felt by the carer. Once things like that have been said they can never be taken back.


So how do couple remain together when faced with the situation where one becomes the carer for the other? I don’t have any magic solutions, its a situation my husband and I have had to deal with for the last 7 years and we are still becoming accustomed to it whilst my illness decides to fluctuate in the extreme.


Its easy when you are the one that is chronically sick to become so wrapped up in what is happening to you that you forget the needs of your partner. You forget the stress you are inadvertently causing them, especially if they have to leave you everyday to go to work and they don’t know what state they will find you in when they return home. I want to tell you this is totally normal, you have embarked on the strangest journey in your life, with weird and wacky symptoms cropping up daily and you will for a time become totally self absorbed. However the time does come where you become accustomed to what’s happening and you will once again be able to look at the bigger picture – life as a couple facing this situation head on together. Weathering the storm.


Facing things together is one of the most important things you need to do to weather the storm. For the carer this means attending hospital/ doctor appointments whenever you can (its not easy if you’re working, employers can be inflexible and unsupportive when you ask for time off). For the partner /carer it means believing in your spouse and not the doctors. What do I mean by this?  Well there came a time when my old gp and hospital consultant were convinced that I was suffering from somatoform disorder / conversion disorder. My husband knew this wasn’t the case, he had seen me faint, my lips turn blue from lack of oxygen and had read the pulse ox reading of 84% oxygen saturation. He had also witnessed my blood pressure readings of 80/54 and although he is not at all medically minded he knew that I couldn’t “fake” these symptoms. He also knew the last thing in the world I wanted to do was be sick and end up having to give up a job I loved. He supported my quest for answers, listened to me as I ranted and raved about the idiot doctors who didn’t seem to understand the basics of the human body. He may not have understood the things I was talking about but he listened and that was incredibly important. He held me when I sobbed for hours and he tried to make things better.


I feel a tremendous amount of guilt for being sick, I know that there is nothing I have done that has made me sick but I still feel guilty for changing both our lives beyond recognition. I feel guilty that some days within minutes of my husband getting home from work I have to go to bed. I feel guilty about the stress I cause him when I am sicker than normal and he has to leave the house for 9 hours whilst he goes to work. I feel guilty that by default that my sickness has fractured his relationship with his family. I feel guilty that I (and external factors outside of our relationship) have triggered such anxiety in him that he now has to take medication. The things that make me feel guilty are endless. He takes everything in his stride. It would be so easy for my guilt to turn to anger and then because he is the one I see everyday, for my anger to be taken out of him.


It’s incredibly important as the one who is sick to try and recognise where your anger is coming from. Your partner is not your whipping boy to have all your frustrations taken out on. Its hard sometimes not to snap or berate him for perceived faults but its not him I am angry with, its this condition and it is not and nor has never been his fault. Its important that you recognise that, no one not even a healthy couple, would put up with a raging partner for very long. That kind of anger can be destructive to a relationship so its important it is directed elsewhere. Speak to someone, a counsellor, a friend, vent on a facebook group but do not direct your anger towards those who love you and whom themselves have endured an incredible upheaval in their lives also due to the illness that has struck you down.


When illness takes away your ability to go out, socialise or attend family events as you both used to its important that you find things to do together as a couple that you both enjoy. Hubby and I have several programmes that we follow and when he is day off we catch up on those programmes together. It may not seem like much but its time where we can discuss things other than the mundane day to day stuff and talk about the TV programme / film. We love The Blacklist, 24, The Walking Dead, Falling Skies, The Great British Menu, One born Every Minute and 24 hours in A&E. We never watch these programmes alone they are our programmes which are to be watched together. By taking the time to “do” stuff together we keep our relationship strong.


I have encouraged hubby to take up activities that take him out of the house. I know that with a stressful job and looking after me he needs something where he is just him and his achievements are his alone. In the last few years hubby has taken up running – which he hates but does because it helps him manage his weight. In that time he has run two half marathons and several 10k runs. I am very proud of him, this year he is running 2 half marathons which is no mean feat. We have a medal and photograph board in our kitchen to show off his achievements. Although most of his training takes place on a treadmill at home, running helps him de-stress and takes him out of his carer role, as whilst running he can not be interrupted. It has done his anxiety / depression the world of good and helped with his weight loss.


He has also joined a slimming club (with some encouragement from me) so that every week he gets out of the house on his day off and meets other people. When you or your partner have a chronic illness / disability it can heavily impact both your social lives. Social interaction is incredibly important for mental health and again this has helped him enormously.


It is important that a carer can step away from that role and get some respite from the daily grind of work and caring. They need time to be themselves, to relax and to be able to forget for a small amount of time the pressures placed upon them. I am envious that he gets to do these things because I no longer can. I will admit here that I do get jealous and insecure when he is mixing with other women. I compare myself to them and the life that he could have. I think its only natural when you are suffering from a chronic illness / disability for your self esteem to take a bit of a bashing. Thankfully our relationship is solid enough for us to discuss my feelings of insecurity and jealousy. He understands why I feel like that and reassures me that he only wants to be with me and he respects our wedding vow of “in sickness and in health”.


I know that I am incredibly lucky to have my husbands support. I won’t lie and say that there aren’t days I could happily throttle him! No ones relationship is perfect and I am certainly not suggesting ours is. A good relationship is built on a friendship. We are each others best friends and both of us are the type of people that would never walk away from a friend because they got sick. Through my experience of chronic sickness over the last 7 years I know that many friends do walk away without a backwards glance.  

So to break it all down here’s what works for us in weathering the storm together;

  1. Support each other through the ups and downs.
  2. See the other person’s situation / point of view.
  3. Get as much family / friend support as you can to lessen the burden.
  4. Find out what the source of your anger is and don’t take it out on your partner 9 times out of 10 it won’t be them that you’re angry with.
  5. If you or your partner is suffering with stress / anxiety / depression speak up and get help. As you can’t change the situation you are in, you do need help either through counselling or through medication or both. Mental health issues do not just go away of their own accord and you need to get some help.
  6. Guilt – is a completely normal feeling for both of you to have. The sick person feels guilty that their illness has changed both your lives. The partner feels guilty that medically there is little they can do to help or change the situation. Talk about it, do not let it fester away.
  7. Find something you can do together rather than separately. Make it the thing that you always do together. For us its watching certain TV shows or films. Sometimes we also prepare meals together. Spending time with each other and not talking about the day to day mundane stuff is good for both of you.
  8. Encourage the carer to take some “me” time. Working and caring for someone is hard work and stressful. Its important that they get some respite from both. Encourage them to take up some exercise (its important they don’t neglect their own health through being so focused on yours) or something where they mix with other people like a club or educational classes. It is important for them to just be themselves.
  9. Talk to each other, even couples that have been together for a long time forget this one. When communication stops, cracks can appear. Take the time to hear what the other person is saying, listening and understanding are just so important.
  10. Physical contact, sex can fall by the wayside when you are chronically sick / disabled. You’re too sick, they are too tired. When sex goes physical contact can disappear as well. Its important that you show each other physically that you both still love each other.Tell them that you love them! Make sure you kiss and hug each other daily. Hold hands in the car, cuddle up on the sofa make physical contact. Sex will return however its not the thing that holds a relationship together. Love does that.

That’s how we are weathering the storm together.

Pity party for one

Before anyone suggests it, this is not a cry for attention. It’s just an expression of how I feel at the moment. Only those of you who have a chronic illness or care for someone with one will get this. The title “Pity party for one” is a complete piss take. I don’t want a pity party, I want a break from everything that is going on at the moment.

It’s difficult to come up with a blog post when all you have faced over the last few weeks is a ramping up of your joint pain and unbelievably bad health (more than normal). I don’t mind joint pain when I have partaken in activities that warrant it. That’s pay back and its normal – for me. It’s when all you have done during the day is move from your bed to the sofa and back again, it really starts sucking all the joy from your life.
I have been in tears or close to them for a few days. This new level of pain has brought me down, I have upped my dose of painkillers but it doesn’t do anything much or it takes all day before I feel any relief. When the pain is bad I am convinced I am depressed, when it eases off I know it is the joint pain that is so badly affecting my mood that I want to go to sleep and not wake up to face another day of pain. That is how bad it is getting and I have no idea why. I don’t want to die or do anything stupid. This is not a cry for help. This is the sheer level of frustration you feel when you are on a runaway pain train. You do not know how you will possibly get through the next hour let alone the other 23, only to face it again, day after day.

You get through it, you don’t know how but you do. The exhaustion leaves you feeling like a zombie and wipes out any reserves you may have had. I don’t know how my body still functions but it does. I know at some point I will get back on top of the pain. I just don’t know how or when. I am sick of waiting.

I can live with a certain level of pain. I have had to, I spent from 1999 to 2011 without medication because I couldn’t get anyone to believe how awful the pain was. I have been on top of it for a few years with the occasional flare up. This pain flare up has building for a few weeks. Its changed from the constant aching to a sharp pain that is unrelenting. I can only describe it as feeling like my knees and hips have been replaced with metal spikes. Every movement feels like the metal spike is rubbing along the bone beside it. Today every time my right foot went to the floor I wanted to cry. I hate using walking aides in the house as they are so very limiting – you can’t carry anything when you use a stick, frame or crutches. I tend to use the furniture to help me hobble around. I seriously considered using my crutches, for me to even say that out loud means I am in a considerable amount of pain.

However I am conscious that I need to keep moving. One of the things you do when you are in pain is limit your movement, its only natural to stop doing something that hurts. With EDS we need to keep moving as much as we can, as not using a joint could mean in the long-term more problems. It’s hard to keep that in your head when you want to scream every time you put your foot to the floor.

I am not looking for sympathy, I am just giving you a peek into my life. Its the bits no one sees because I wont let them.  I hate feeling this miserable, I hate the pity party I am currently throwing myself, it just isn’t the real me. It wears you down, exhausts you and causes you to draw into yourself rather than live in the real world. I am at times too exhausted by it all to speak.
You would never know if you saw me in person. I am good at hiding it in plain sight. I can keep a fake smile plastered on my face for a couple of hours. I can keep a light and breezy conversation going whilst my vision goes grey as my blood pressure drops. I have become so good at hiding the sick me, I sometimes doubt how ill I am myself. Then reality strikes, as on Sunday when I lost the ability to urinate again. Thankfully for some reason I could place the catheter when all attempts on previous days had failed. Its only when bits of me stop working properly that I have to acknowledge that life is not normal. I am left asking myself how did I get here? What happened in 2007 to change the course of my life so dramatically? I have no answers.

The only person that ever sees my struggle is my husband. I would be lost without him. He is the only thing that keeps me going at the moment, well him, the dogs, my parents, my sister and her family. I am struggling underneath the weight of this pain. If I could just get some relief just for a few hours I would feel like me again. I wouldn’t have to wear this mask that I hide behind for fear of people seeing how weak and vulnerable I am.

I am sorry if this post seems negative. It’s not meant to be, it’s a picture of what life can be like when you are chronically sick and trapped within your house because the pain and stimulation of the world outside is just too much for you. I rarely feel as low as I have for the last few days. I know at some point I will catch a break and I will feel better – better than I do right now. It will happen, it always does, that is what I cling too. 

“This too shall pass”

Eustachian Tube Dysfunction

Just when you think you are managing to cope with everything that has been thrown at you health-wise, life throws you yet another curve ball.

For nearly two weeks I have been suffering with increasingly debilitating bouts of dizziness. Initially I believed this to be low blood pressure, as when measured it has been on the low side but nothing strikingly different from normal. 

Last Thursday it ramped up a gear which was excellent timing, (isn’t it always?) as I had a hospital appointment with my consultant. Half way through chatting to the stand in (my consultant was on annual leave) I ended up having to put my head between my knees. It was so severe that the dizziness left me unable to speak for 30 seconds and believe me that is a tough thing to do. The stand in was concerned and offered me a glass of water. I declined because the way my stomach was feeling I knew it would induce vomiting that would be unable to stop. They then took my pulse and blood pressure. In the following few minutes they suggested that I needed to come into hospital…..next week. I declined.

You may think I am mad for declining but my reasons behind it were firstly I have been declining in health for over a year and have been left to get on with it. Plus I was feeling so poorly at that moment in time the only thing I wanted was my own bed, darkness and not to be subjected to countless examinations. Yes I was sick but regular readers are aware of my love of hospitals and the rules for calling an ambulance – unconsciousness or if I ask for it. I didn’t feel sick enough for a hospital stay. There were also economic reasons for not wanting to be admitted. Contrary to popular belief in the UK those of us unlucky enough to find ourselves in a position where we can’t work, are not living a life of luxury. To be in hospital for a week meant my husband taking a week off work unpaid. That is money that we can not do without. He is out of holiday pay and there is a great deal going on in the business he works for. He doesn’t need to be attracting the negative attention which caring for his disabled wife would most certainly draw.

The registrar and I agreed on a date in April for my admittance however that all depends on whether the hospital is on black alert. Black alert means there are no bed and only medical emergencies are being admitted. Unless its life or death you aren’t coming in. Due to cancellations of operations that I am aware of, I would hazard a guess the place is close to a black alert again. With this being booked in advance my husband can book paid leave and we can put in place the support we need.

After the hospital appointment I slept for close to 24 hours, something I never do. I am always tired after appointments but I rarely sleep. When I woke up I suddenly realised what was causing the dizziness. It wasn’t my blood pressure but my ears. My Eustachian Tube dysfunction was back for the first time since 2012. The familiar feeling of pressure in both ears, tinnitus and dizziness was back. Until the Saturday morning I had no feeling of pressure in my ears, so I had been barking up the wrong tree for the cause of my symptoms. No wonder increasing my salt tablets and steroids had done nothing to alleviate the spins.

Knowing what is causing the issue always reassures me. I dosed myself up on travel sickness tablets and took some over the counter steroid nasal spray to try to reopen my Eustachian tubes. The tubes are connected to your sinuses, so although my sinuses weren’t feeling blocked somewhere between my nose and ears they had become inflamed causing them to swell so much they collapse shut. When looking inside the ear a doctor can see that the ear drum is inverted, which caused by the pressure of the tubes swelling shut. Obviously I can’t see this but I can feel it. The feeling closely resembles the pressure when taking off / landing in an aeroplane or when travelling in the car up a steep hill. Your ears feel like they are on the verge of popping but never do.

By Monday I had to admit that the dizziness was getting worse. It was making me nauseous and I was unable to sit upright for more than a few minutes at a time. The Dr prescribed me some stronger steroid nasal spray and some anti sickness medication. Unfortunately the anti sickness medication although wonderfully effective didn’t agree with me. Diarrhoea and dizziness do not go well together.

This bout of inner ear problems is the worst I have ever suffered. It has been so debilitating I have been stuck in bed for close to a week. I am as white as a sheet, can barely walk as my balance is so bad and I just feel absolutely awful. Nothing other than lying completely still stops the dizziness. Sometimes the room spins violently other times the dizziness is internal. I have been so ill my husband told me he was staying at home to look after me. Every time that he has stayed at home to look after me I have had to ask. This time he took one look at me and told me, this was not up for discussion.

I have barely been able to use the computer, something about the screen seems to set the dizziness off so this post has been written over several days a sentence at a time. Hence why this post is a lot shorter than normal.

The good news is that this will go away, the bad news is it could be weeks or months until it is completely resolved. If it doesn’t resolve I may need grommets to try to keep the tubes open. Wish me luck!