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.

Thats how we are weathering the storm together.

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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!

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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.

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