Weathering the storm - keeping a relationship strong

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.

You know you have EDS when.....

As this is the last Monday in May this will be the last post on a Monday dedicated to EDS. Thats not to say I wont ever write about EDS again on a Monday it just won't be a deliberate act!

On many of the groups that I am part of on facebook every so often someone starts a post along the lines of "You know you have EDS when...?" and others are invited to take part and effectively fill in the blank. Its always prefaced with "lets make this a positive post" or "just for fun" , I find this highly irritating. EDS seriously affects me and impacts the way I live my life from the moment I wake from the moment I sleep. I struggle to find anything remotely funny about having this condition not because I am an old sour puss but because I think these kinds of posts trivialise other peoples suffering.

I am not saying that I never laugh about the craziness that EDS has imparted on my life its just those laughs are few and far between.

I accept that EDS is a syndrome where people will be affected to a greater or lesser degree. However some of these groups are mainly people who are on the lighter end of the scale and when others start talking about the more serious side of EDS like wheelchairs, gastroparesis / intestinal failure or multiple dislocations they are told that they are scaring people for telling them how EDS affects them. Its a poor show when you can't be supported by the community you belong to.

For EDS awareness month a UK EDS charity released a short video highlighting some aspects of EDS. It showed a gymnast showing off her flexibility by contorting into various positions and it also showed some teenage girls who were being fed via a nasogastric tube. On one of the groups this was heavily criticised for being unduly negative about EDS. I thought it was well balanced but I guess some people like to live in denial, that the bad stuff won't happen to them. They themselves are guilty of not accepting this is a syndrome which affects individuals differently.

So I am going to give you my version of "You know you have EDS when ...." and hang the consequences! 

Warning this post is dripping with sarcasm!

You know you have EDS when despite sleeping on a memory foam mattress with a maternity pillow and special neck pillow you wake up feeling like you slept on a concrete slab. Every joint is stiff and sore and depending on whether or not my stomach is working, the painkillers I have just taken may or may not work.

You know you have EDS when easily getting down on the floor ends up taking 45 minutes to get back up. Its become such a regular occurrence in this house that I am now banned from getting down on the floor without supervision. The last time I got stuck on the floor I was there for over an hour. My arms wouldn't take my weight pushing me back up and my legs were refusing to cooperate. It wasn't remotely funny because yet again it showed me how much my body has declined in the last 7 years.

You know you have EDS when you can dislocate your hip rolling over in bed or dislocate your shoulder by flicking your hair out of your eye. My hips can and do pop out with tremendous ease along with my shoulders. If they don't fully dislocate they will sublux (partially dislocate) leaving me with a horrid grinding sensation in the socket of the joint.

You know you have EDS when lying on the sofa not moving you hear a loud pop and you know that is a disc in your back. You daren't move because you know what kind of pain its going to cause. Instead you lie still in the hope whatever made the pop resolves itself.

You know you have EDS when the pain is so intense you can't even stand the dogs gently knocking you and you have a massive sense of humour failure.

You know you have EDS when you lose a stone  (14lbs for those of you in the USA) in weight in 3 weeks because you can't eat more than 6 jacobs cream crackers in a day. Any more than that and you are projectile vomiting so hard you start to bring up blood.

You know you have EDS when despite not being constipated and knowing that you need to go for a poo your muscles won't coordinate to get the damn thing out. You resort to all sorts of weird things to encourage the muscles to wake up but nothing happens and it gets more and more uncomfortable. Later you feel like you have given birth to what is termed in this house as a "Poo baby" as it feels like you have carried it inside you for 9 months!

You know you have EDS when you randomly choke on your own saliva. There is some argument that the issue with swallowing could actually be down to dysautonomia rather than EDS. It doesn't matter I am still a world champion when it comes to this!

You know you have EDS when you have more supports / walking aides  in your house than the local chemist. Wrist supports, knee braces, crutches, walking sticks, ankle braces wheelchair and frames. I need a whole room in my house just to accommodate all the things I use on a daily basis to help with pain / mobility.

You know you have EDS when daily from 3pm onwards you are trying to work out in your head how early you can get to bed without annoying the husband. Exhaustion / fatigue is a real issue for people with EDS. It is estimated that due to our lax muscles, ligaments and tendons we can use as much as 5 times more energy than normal folk just doing the basic things like standing, walking etc. The fatigue we suffer isn't cured by " a good nights sleep" ( you don't sleep very well with EDS), it is constant and crushing. Some days you spend the whole day in a fog and other days it just creeps up on you during the day.

You know you have EDS when sleeping in ill fitting nightwear causes bruises. I have slept in an oversized t-shirt before and ended up with arms that were black and blue due to the material bunching up and pressing on my skin.

You know you have EDS when you can not walk through a door without smacking into the frame. You can not miss an opportunity to get your fingers caught in drawers or doors. You poke yourself in the eye flicking your hair out of the way! EDS sufferes struggle with Proprioception we can not identify where our body is or joints are in relation to other objects or even other parts of our body. We are often thought of as clumsy due to our constant tripping over our own feet or walking into things.

You know you have EDS when in the height of summer you have a hot water bottle or heat wrap clamped to part of your body.

You know you have EDS when you have to write a list like this!

Thanks for reading!

Permission denied

I have a real problem with some medical staff here in the UK. My problem is they seem to have forgotten that my body is mine and that I have the ultimate say on whether they examine me or not. I think many medical staff have become so caught up in the job that they no longer see the patient as an individual who has autonomy over their body. Permission is not being asked for before intimate examinations are taking place and in my view hundreds if not thousands of patients are being assaulted every day in the UK through medical staff treating a medical examination as something that the patient has to have rather than asking for their permission.

You may think I am over reacting but where else outside of a hospital would you allow someone to touch you intimately or remove your clothing without consent? It simply doesnt happen and if it did the police would class it as at best assault and at worst sexual assault.

It makes me extremely angry that medical staff are routinely ignoring the patients right to say no and either putting pressure on them to consent or carrying out an examination without consent. If you think this doesnt happen I can give you two examples of when it has happened to me whilst in hospital and these are in 1998 and then again in 2014. In my opinion this has got worse not better. Implied consent is not enough and it isn't under the law also. I dont think it will be long before a member of the medical profession will be prosecuted for assault in this country due to either assuming that a patient has consented because they are there or carrying out an examination / removing clothing without the patients consent.

Obviously in an emergency situation -  the patient is unconscious etc then yes consent does not need to be sought. I dont have a problem with those situations, I have a problem with a fully conscious and alert patient being bullied / coerced into an examination or not actually being given the opportunity to decline the procedure / examination.

In 1998 I had quite a serious operation and was opened up from just below my sternum to my pubic bone. The operation was to remove adhesions that had grown around my bowel and had stuck my intestines to my abdominal wall. I was told by the nurses this was one of the most painful operations you can have and I can assure you it was a 10 out of 10 on the pain scale. I had a morphine pump that I could self administer morphine with and I was allowed to press the button every five minutes. I would lie there watching the clock count down for my next dose because what ever was administered wasn't enough to take the edge off.

 I was dazed and confused the following morning after the operation and in agony when two health care assistants whipped the curtains around my bed and informed me they were there to give me a wash. I wasn't asked "would I like a wash?" I wasn't asked if I wanted two complete strangers to strip me naked, I wasn't asked if my pain was adequately enough controlled that I could get out of bed without screaming. It was presented as a fait au complet, I had no say in the matter, I was being washed whether I wanted them to or not. I cried and cried begging them to leave me alone, that I wasn't well enough to stand and be washed. My cries fell on deaf ears, they pulled the sheets back and proceeded to man handle me out of the bed. I cried with the pain and humiliation of it all. The hospital gown was soaked in blood and stuck to the dressing that covered the wound, gentle they were not. It was ripped off me and I was left there standing naked with nothing to preserve my dignity.

I am an intensely private individual when it comes to my body. It probably stems from low self esteem. I always dress modestly, I don't wear string vests in the summer I wear t-shirts. I don't really wear shorts outside of my house. When I was younger when I wore short skirts ( as was the fashion then) I wore thick black tights. I just don't feel comfortable flashing the flesh and can probably count on one hand the number of people who have seen me in a swimming costume. I just don't whip my body out and display it. I take my hat off to anyone who can flash the flesh but its just not me.

So standing there that morning in the nude in front of two strangers was humiliating. I was vulnerable and helpless and they did nothing to put me at my ease. I had been bullied and coerced into being washed. I could have managed to gently wash myself in bed had I been given the option but options were not offered. My consent was not sought and this is what I am talking about, staff ignoring patients and not treating them appropriately. Where else in life would this situation come about being stripped naked by two strangers against your wishes? Anywhere else this would be seen as a criminal offence yet this regularly goes on in hospitals up and down the UK.


These things shouldn't be happening but they are, fast forward to April 2014 and I am back in hospital for my octreotide trial. Within 30 minutes my dignity is being challenged when I am informed that I will have to be swabbed for MRSA. I stupidly assumed that this would just be a nasal swab but oh no its a nasal swab, throat swab and perineum swab. Not only do I have to swab my ring piece (well practically) but as privacy and dignity are lost as soon as you enter hospital I have to be observed doing it to ensure I swab properly. How hard is it to rub a long handled cotton bud on your perineum? 

This wasn't the only issue I encountered whilst in hospital but thats a whole other blog post! 

On the evening of my admission I kicked up a bit of a fuss due to issues with my medication which was being administered at the incorrect doses. After the pain medication issue was sorted out a nurse and a healthcare assistant came into the room whipped the curtains around and without even talking to me started to remove the bed clothes. I sat bolt upright and demanded to know what they thought they were doing. The nurse answered and said "We are checking you for bed sores". There was no "we need to check you for bedsores is that ok?" or " is it ok if we check your body for bed sores?" Again it was treated as a fait au complet, which now being older and wiser I knew it wasn't. I quickly informed them as I had only been on the ward 4 hours and was checked earlier permission was denied. This didn't stop the nurse who then started tugging at my pajama bottoms to remove them. I jumped back and said " take your hands off me, continue and I will call the police, what you are doing is assault". She jumped backwards and said "we have to check you for bedsores". It didn't seem to compute with her that I was completely within my rights to refuse this.

She started to give me a long talk about bed sores and why it was important that she check my buttocks, back and heels. When she realised she had failed to persuade me she gave up. A weaker more vulnerable patient wouldn't have put up a fight. 

The next morning whilst I was chatting to the pharmacist about my medication a health care assistant waltzed into my room and announced she was there to wash me. She didn't introduce herself or seem concerned that a male member of staff was in the room and perhaps I wouldn't want to strip off in front of him. My dignity seemed to be the last thing on her mind. When I declined the offer of a bed bath with an audience she didn't like it. I told her I would be taking a shower and then again I was told she would have to watch me. I joked with the pharmacist that all the staff on the ward were a bunch of perverts. The health care assistant stropped off. I simply waited for her to be distracted by someone's bell to go off and took a shower without being watched!

I am still incredibly angry that medical staff seem to think their job overrides my dignity and the need for my consent. They need to understand that they have to ask for my consent directly and not assume implied consent because I am in the building. The NHS has produced this document Reference guide to consent for examination or treatment it clearly states "This booklet provides a guide to English law concerning consent to physical 
examination or treatment. This second edition provides an update on legislation 
relating to obtaining valid consent – the Human Tissue Act 2004, the Mental 
Capacity Act 2005 and recent legal cases – and provides references where appropriate."

It goes on to say "Valid consent 
1. For consent to be valid, it must be given voluntarily by an appropriately informed 
person who has the capacity to consent to the intervention in question (this will 
be the patient or someone with parental responsibility for a patient under the age 
of 18,11 someone authorised to do so under a Lasting Power of Attorney (LPA) or 
someone who has the authority to make treatment decisions as a court appointed 
deputy12). Acquiescence where the person does not know what the intervention entails 
is not ‘consent’. "

If the NHS has this booklet circulating then either the issue of consent has been an issue for them or they are aware that many medical professionals are working under the notion of assumed consent. Whatever the issue it is clear that the education of its staff is not working. Since my experience in 1998 things haven't changed and thats not in the patients best interest.

I am sorry this is such a long post but it is something that I am very passionate about. Patients are unaware of their right to say no and staff seem to be happy to keep it that way.

Sources:
Reference guide to consent for examination or treatment

BMJ Paternalism or partnership 

Are women sufficiently well informed to provide valid consent for the cervical smear test?

A fundamental problem of consent

EDS information.

As promised every blog post on a Monday throughout May 2014 will be about EDS to raise awareness of the condition or to simply help fellow sufferers. Over the last few weeks I have received a few questions / comments on www.themyastheniakid.com and www.themyastheniakid.blogspot.co.uk
asking for further information regarding the different types of EDS  after people had read
If you think you have Ehlers Danlos Syndrome  / (wordpress blog version of the same post) this has been one of my all time most popular posts and after all this time weekly can receive more views than my new posts combined, so clearly there is a need for this information.

I am not a doctor nor an expert on EDS and I can only provide links to information sources or tell you about my own personal experiences. I have had to reach out to my friends in the EDS community to pool some information together and my eternal thanks must go to Anna who has helped no end putting this post together.

Firstly I wanted to provide a link which explains the different types of EDS. ehlers-danlos.org provides a quite easily understood outline of the different types of EDS, their symptoms, how they are tested for and the way that they are inherited. Sometimes I find sites provide too much information for the "beginner", I get lost as soon as they start talking about genetics my brain just can't cope with it. This site explains it as simply as possible which is good for when I have those information overload issues!

My blog mainly focuses on my "flavour" of EDS which is hypermobility. I do have friends with Classical EDS but I can only write from my own perspective of how it affects my own health as each type of EDS can present with its own unique symptoms. As I have stated in previous posts EDS is a syndrome so people are affected differently, no two EDS patients are the same. So the blog is very much my own personal story and can not be claimed to represent the whole HEDS / EDS  community.

Having spent a while researching good sites / articles for EDS I came across this piece of advice on ehlers-danlos.org  How to prepare for your doctors appointment . This takes you through step by step on preparing a medical history  and how to approach the subject with your doctor. Many doctors seem to be working under the impression that EDS is extremely rare - its not that rare its just under diagnosed and that all cases of EDS are picked up in childhood ( again not true!). Having lurked on forums and from my own personal experience many of us are diagnosed in our 30's and 40's (my dad was diagnosed after me at the age of 61!) after years of being fobbed off and being told that we are suffering with anxiety, somatisation disorder or are just reading too much on the internet.

I think a lot of the problem in the UK is that health professionals work in isolation. As a child had my dentist and doctor spoken to each other red flags would have been raised (as I showed clear dental signs of EDS and my constant complaints of leg pain to my GP),  they may have seen the bigger picture. By the health care professionals working in isolation it meant I spent many years thinking it was my unique problem and there was no name for it.

I have found this link thanks to Anna EDS information it is the most comprehensive journal article that I have ever found and if you believe you suffer from EDS or have the EDS diagnosis I sincerely recommend that you print this article out (perhaps lose all the references as its 23 pages long in total!) and keep it, to shove under the noses of any doctors that you come across. I have had my diagnosis since 2011 but I have found information out that I had no clue related to EDS! It is an absolute gem of an article and one that I will read and reread because each time I do something else pops out at me!

I  have never done this before with any blog post but this post is being dedicated to Skye in Australia who was the inspiration behind this post and told me her story. Her questions also pointed to the need for my blog to contain more information about EDS that would be useful to those searching for a diagnosis and those already diagnosed.

EDS is a multi-system syndrome and needs to be treated as such rather than just being seen as flexible joints and pain! Our doctors need to be educated about it and so do we, otherwise how can we be our own health advocates?

EDS and Pain

As promised as part of EDS awareness month here in the UK I am dedicating each Mondays blog post to the subject of EDS. However due to being hideously poorly this is being posted on Thursday instead. 

EDS to me equals pain. Some people are really lucky (after all EDS is a syndrome with people affected to different degrees) and have very flexible joints and no pain. Others like me have a great deal of pain and others again have the added complications of gastroparesis and intestinal failure. Despite my pain I still consider myself one of the lucky ones.

I've had pain in various parts of my body for as long as I can remember. I don't recall a day in life where I wasn't experiencing pain of some description or another. As a child I assumed that everyone suffered with these types of pain and that it was normal. I limited discussions on it not wanting to appear weak, if no one else was mentioning it then there must be something wrong with me if I had to mention it. When I did mention my pain it was brushed off as growing pains or that I was just saying it to get out of something I didn't want to do.

From the age of 16 I had problems with my back, I regularly slipped discs up and down my spine. It wasn't until I got much older that things took a turn for the worse with my life long companion EDS. 

In 1999 I managed to injure my back quite badly, slipping two discs and I was in excruciating pain. I knew when I heard a very loud pop that I had done something bad. I didn't make a fuss though as I was in an exercise class and we were lying on the floor stretching out after our workout. Yes I managed to slip two discs lying down. That is how much fun EDS is! I took myself off home after class, dosed myself up on painkillers and went to bed. The following morning although I could barely stand and the pain was so intense involuntary tears ran down my face, I sucked it up and went to work. My boss was not a pleasant person and saw any illness or injury as a personal failing. At every available opportunity he / she would bitch at me calling me a hypochondriac or saying " they had never met someone with such bad health". This person never had an ounce of compassion for another human being in their life. When I rang them and informed he/she I would have to go home as I was in too much pain the phone was slammed down on me. The previous attitudes I had encountered when I mentioned I was in pain were still alive and well.

Over the next few years I had a few more slipped discs. I regularly visited a chiropractor who practised the Bowen technique. I confounded her as the manipulations never held. She told me at the end of one session that she knew that there was something wrong with me she just had no idea what it was. She had never come across it in all the years that she had been practising. 

I started to regularly pick up injuries plantar fasciitis in both feet at the same time, bursitis in both hips at the same time. All the time I carried on working with these injuries despite being in pain. My back was getting worse and worse. I could no longer stand in one spot for more than a minute without it seizing and locking up. Despite numerous visits to the doctors no investigations were done, occasionally I would be sent for physiotherapy but most of the time I was just given pain medications. The pain medications never worked they barely took the edge off. If I was using prescription medications I would be self medicating with over the counter drugs. It got to the point where I couldn't not take pain medications, such was the intensity of the pain I was enduring. I wasn't addicted to painkillers but without them life was miserable due to the pain being under medicated for years. 

I never got on top of my pain until 2011 and I finally got my diagnosis of EDS. I had to fight to get a referral and even then I had to pay to see a doctor privately. Although this doctor did diagnose the EDS she didn't appreciate the smallest amounts of movement above the limited activity I did perform daily would have me in agony. She objected to the fact I was using a wheelchair ( something I had used since 2008 as walking caused so much pain in my back, hips, knees and ankles on top of the dysautonomia I was also suffering with). Her reasoning was I needed to be more active and this would reduce the pain, what she didn't take into account was the severity of my postural orthostatic tachycardia syndrome / dysautonomia. At the end of the appointment she made me walk from her consulting room to reception. A distance I hadn't tackled for years. She walked behind my husband and I ensuring I didn't get back in my wheelchair. I should have stood up for myself and told her to ---- off but so pleased was I to have a diagnosis I was not going to let anything change her mind about what she was going to write in my official letter of diagnosis.

She proved her point with difficulty I could walk that distance however what she didn't see was the three weeks I spent in bed recovering from her "wheelchair intervention". Bursitis flared in both my hips, plantar fasciitis in both feet and my back has never been the same since. In tears I contacted my gp, who after trying me on every drug he could before starting me on morphine reluctantly had to admit defeat and write the prescription. 

We had both held off from that day for so long. Once on this road there was no turning back. There is a lot of emotion about opiates, some people seem to think that if you take opiates and aren't dying from cancer or some other dreadful disease then you are a junkie / addict. Let me assure you this is simply not the case, I do not and never have taken morphine to get high, I don't get high with it. What morphine allows me to do is get out of bed and have a bit of a life. Without morphine I would be in bed unable to move due to the severe pain in my joints. I would have zero quality of life. I do not intend to spend the rest of my life staring at four walls because of peoples ill informed attitudes towards opiates. After taking the medication I spent the first time in as long as I could remember without severe pain.

People may argue that I could have tried various different things before "giving up" and taking an opiate painkiller. I would respond with "don't you think I have tried?". Here are just a few of the things that I have tried over the years acupuncture, osteopathy, Bowen technique chiropractors, massage, Tens machines, exercise, Yoga, applying heat and using distraction techniques. You see it wasn't that I didn't try, it was that nothing worked. I still use applying heat pads / hot water bottles and distraction techniques daily to manage my pain. I will always use these first before resorting to taking more medication. Its never a case of popping more pills I use my medication sparingly. I plan to live a long life and I don't want to get 20 years down the line and be out of pain medication options.

Sometimes I get asked "what joints hurt?" its easier to reply with what joints are not hurting that day. Every joint in my body causes me pain. For the last few days every joint in my body has been burning. The pain has been so intense it's been difficult to get comfortable as even the duvet ( comforter in the USA I believe) touching my feet has hurt. Its not always this bad most days its a 5-6/10 which is a level I can deal with. At the moment my back and hips have decided they would like to be the centre of attention, next week it could be something else! Some days its a constant battle to keep on top of the pain to stop it spiralling out of control other days I don't need to touch additional pain killers however those days have been few and far between recently.

Like anyone with chronic pain there are days when the pain alters my personality. On a bad day I can become quiet and withdrawn. I can get really snappy, losing my temper at the slightest provocation. A dogs paw placed in the wrong place can leave me writhing in agony. I have a couple of these days a week and they are usually preceded by a night of poor sleep. Poor sleep is the chronic pain sufferers worst nightmare, for me it doesn't only affect my pain levels but it also exacerbates my dysautonomia. 

Over the years I have also noticed that changes in the weather can also lead to increased pain. There is a joke amongst the EDS community that we are human barometers. I have an increase in migraines and joint pain when the weather is stormy. Cold weather is the absolute worst for my joints as it makes everything feel tight and sore. If my legs get cold ( even just a draft on them) it can cause me agonising pain. They don't change colour like in Raynauds phenomenon but they do go pale and until I get them warmed up the pain can be very intense. 

EDS causes me a great deal of pain but I still try to get as much out of life as possible. One day when I was visiting my consultant I said " I wish I had known sooner that I had EDS, I could have tried to protect my joints". He replied "would you have lived life any differently?" my answer was "probably not."

Me in bed on a bad pain day!

Apologies

Please accept my sincere apologies after being hideously ill for the last 48 hours I have been unable to complete the scheduled blog post.

Normal service will resume Thursday.

Invisible Disability

Before I became ill in 2007, I  skirted around the issue of disability. I knew that some people were disabled and my sister was amongst them. I didn't really understand it fully until it happened to me and then I had to grasp the fact I had what is known in disability / chronic illness circles  as an invisible disability. I like many others had thought that if you were sick you "looked" sick.

What is an invisible disability?

An invisible disability is one that is not immediately apparent when looking at the person in front of you. You can't tell by looking at me that I am disabled. Most of the time I can look quite healthy to those who don't know me. By looking at me you can't tell that every step I take is a struggle, that my blood pressure is dropping and that my heart is racing. You may notice there is something wrong with me, if I slowly slide down towards the floor but other than my wheelchair there is no outward clue that I have severe autonomic dysfunction or Ehlers Danlos Syndrome.You may notice my disability if ptosis strikes but on the whole my disability is invisible to you but that doesn't mean it isn't real.


Its not just me that has an invisible disability there are millions of us all over the world. It is estimated in the UK that one in seven people are disabled or could be classed as disabled under the Equalities Act 2010. To qualify as disabled, for want of a better phrase you have to have a condition that impacts your everyday life and have a condition that will last more than 12 months. With some conditions you are automatically protected under the Equalities Act such as Cancer, MS or AIDS. With so many of us walking around (or not in my case, more like wheeled around!) you would think that disability would be more visible to those around us and more accepted. That we would be more represented in the media. By this not being the case it makes us invisible and our conditions invisible too.

You can't identify a person that suffers from epilepsy or diabetes or asthma or rheumatoid arthritis or lupus or mental illness just by looking at them. Not even the medical profession can do that, why do you think they have to carry out so many tests to diagnose someone? If our health conditions could be diagnosed just by looking at us, I wouldn't have had four years in the wilderness not knowing what the hell was wrong with me!

Other than my trusty chariot pictured below or the fact I walk with a stick there are no clues for the outside world to pick up on. Even with my mobility aides my disability, my level of "sickness" is challenged by the outside world.

It seems to be no longer enough to use a wheelchair to be classed as disabled. People seem to be doubtful of a disability unless they can see it. Im sorry my disability does not present itself in a way that's "acceptable" to the general public. When I have been out in public, with my ptosis is in full swing, I get stares or people making fun of me. Even with one side of my face looking like I have had a stroke people do not believe that I am disabled. I no longer know if its the fact that my disability is invisible or if its the case that my disability is simply unacceptable and is chosen by others to be ignored.

Having an invisible disability can be a bit of a nightmare, especially now in the UK where people with disabilities are being hounded by the right wing press and being accused of being benefit scroungers. Sometimes it can feel like the whole world is against you when you have an invisible or visible disability.The disabled in this country seem to be divided into the "worthy disabled" and the "unworthy benefit scrounging scum disabled". Usually those of us with an invisible disability fall into the unworthy category, unless its a few special conditions, which means by the Daily Mail disability test you go straight into the "worthy disabled" section. I am not saying that anyone is anymore disabled than anyone else, being disabled / chronically sick  sucks no matter what the cause. I am simply trying to explain what its like living with an invisible disability in the UK under the coalition government.

The problem with having an invisible disability

The examples below are what have happened to both my husband and I.

This happens on a regular basis to us. My husband drives our car into a disabled parking bay and I have placed our blue badge in the windscreen so that parking attendant can see we are legitimately allowed to park in this spot. Que the angry member of the public, (having witnessed us park up and not "look" disabled), starts accusing us of using a disabled  parking space when we arent entitled to. Its happened on numerous occasions now, we deal with it by saying nothing, when it first happened we tried to engage with them and explain I was a wheelchair user but it soon became clear that we were wasting our time and energy. Usually my husband assembling my wheelchair at the back of the car is enough to get them to shut up. I would like to point out we have never received any kind of apology after they have verbally abused us. The accusers tend to sculk off rather quietly, I secretly hope that they never do it again to anyone else who does not "look disabled".

Last year in the height of summer I accompanied my husband when he went to take our dogs out for a walk on the local common. As this is just too physically demanding for me I sat in the car enjoying the view on a perfect summers day. My window was wound down and as I sat there minding my own business two walkers went past. At the top of their voices I heard one of them say to the other "What a lazy bitch, sat in her car on a day like this" to which the other replied "what's the f***ing point of doing that?". These were not young people who made these comments but a couple in their late 60's. I was so stunned by what I was so obviously supposed to hear I couldn't come up with a reply. My cheeks burned and tears pricked my eyes. These people had no idea why I wasn't walking and were quite happy to sit in judgement of me. I would give anything to be able to walk with my dogs on the common. This has been one of the hardest things to accept, that I have lost the ability to walk my dogs, as I used to walk them for miles everyday before I got sick. Their comments really hurt me.

I was in hospital a few years ago and had my walking frame beside my bed to enable me to use the toilet and shower which were just a few metres away. When you are admitted to a ward you are supposed to have a load of paperwork filled out containing information about you such as whether you are fully mobile, need assistance, next of kin etc. On this occasion no paperwork had been completed and to be honest I was too sick to care at the time. The next morning when one of the nurses I knew came on the ward she had a look at my paperwork, only to find that the nurse who had completed it had stated I was fully mobile and needed no assistance with washing or dressing. Blatantly not true! The night before I'd had to hide my walking frame as the nurse kept trying to move it away from me. Despite me telling her repeatedly it was mine. When I asked about the mistakes on the paperwork I was told "I looked too well to need help" and "I looked so young". I didnt realise that to qualify as disabled I had to look a certain way! It is a bit disappointing when you are in a hospital your disability is completely invisible to them also.

This happened again when I was admitted to the hospital for my octreotide trial. Despite the nurse leading us to my room as I was being pushed in my wheelchair, when she completed my admission paperwork she said "you're fully mobile aren't you?". What made it even more galling was she was resting her foot on my wheelchair at the time. Next to her was a walking frame I had been using, along with my stick. I did have to wonder how many clues this nurse needed to grasp the fact that no I am not fully mobile! Is it because I don't have an obvious disability that people seem to think either a) I just use the wheelchair as I am too lazy to walk or b) they just don't think before they open their mouths? These situations are incredibly frustrating especially when the staff have seen you in the wheelchair not 20 minutes earlier. If they don't accept that I am disabled how is a member of the general public supposed to?

These are just a few examples which immediately spring to mind. I dont know what bothers me more about having an invisible disability the fact that I get abused when using a disabled parking space or the fact that even medical staff don't seem to understand the concept of an invisible disability.

I would love to hear your stories about the problems that arise with invisible disabilities and use them in a blog post to highlight the issues we face.

 

Clearly I am too glamorous to be invisible! Friends refer to this picture as mys "Patsy" picture - suggesting I look like the character Patsy from the TV series Absolutely Fabulous!

Octreotide week two

After what seemed like a disastrous first week on Octreotide (which I am taking for postural orthostatic tachycardia syndrome and post prandial hypotension) I am very happy to report the last week or so has been an absolute breeze! No side effects and my body seems more than able to cope on the dose that I am injecting once a day.

I had truly forgotten what its like to eat lunch and then not fall asleep / pass out (losing the whole afternoon), you know like normal people do. I've found my rhythm with the octreotide as long as I eat within 30-45 minutes of the injection I have no unpleasant side effects. I have noticed that sometimes it can send my blood sugar levels crashing down and it can on occasion leave me feeling a little shaky but as long as I eat on schedule that is quickly remedied.

On Saturday 26th April I managed to completely balls things up (I am on a learning curve here so mistakes are to be expected). I left it far too long between injecting and eating, approximately about an hour. The effect of this was to drop my blood sugar levels and there just wasn't enough octreotide in my system to cover me during the digestion of my meal. Blood pooled in my abdomen, dropping my blood pressure and to cut a long story short I ended up sleeping away the afternoon. I was so angry with myself because I had messed things up but not only that when I've had an episode like that it makes me feel very ill for several hours afterwards. So my mistake effectively wrote off the rest of the day. It won't be something I will be repeating in a hurry.

I am writing this on Tuesday 29th April and since Saturday I've been better at keeping track of the time. I am getting into a better routine and no longer feel so daunted when it comes to injecting myself. I am now contemplating going back up to two injections a day. The metallic taste has gone along with the weird headache I was experiencing initially. It seems like its the right time to move things forward. I know if things don't go well I can stop for 24 hours and then restart on just one injection a day.

Its very hard having 90 minutes of near normalcy or improvement for me just once a day. The main difference octreotide has made is not having to retire to bed every afternoon after I have eaten. I am managing to spend a whole day out of bed which has been unheard of for quite sometime. With that though comes repercussions, the afternoon lie down used to let me recharge my batteries if I didn't have a full on episode. It would give me some energy for the few hours I would see my husband after work. Now though by 4pm I am ready for my bed and I am having more joint pain because of sitting up for longer. I have over the last 12 months lost a lot of mobility due to my health taking a further nose dive. I am beginning to regret having 2 sofas in the lounge and wish sometimes I had got a day bed. I am going to have to start taking some time out of my afternoon to just lie down.

Its also hard dealing with the ignorance of some people who assume that octreotide is some kind of magic cure for me. It helps the PoTS issues but it doesn't stop the pain from the EDS. It doesn't stop the fatigue the EDS creates or from the PoTS. There is no cure for either of these conditions currently only treatments and for those of you who have followed my blog over the years you know I haven't had an easy ride trying all those different medications.

So at some point over the next few days I will be increasing my dose back up to two injections a day. Once I have been doing it for a little while I will update you with how its been going.