Weathering the storm - keeping a relationship strong

  It has been a busy week here and I simply haven't left myself enough time to write a blog piece this week and rather than give you nothing here's one I made earlier. I thought I would re-blog this post from May 2014, I know I have re-blogged this post before but I do think this one is important and we can all forget that relationships suffer due to a loved one becoming sick.

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.

I am a work in progress

Today has got me in a reflective mood, 10 years ago today I met the man I will spend the rest of my life with. On Sunday we will have been a couple for 24 years, in September we will have been married 21 years.

I look back now and think how young we were when we met just 23 years old and just 26 when we married. Thinking about how much we have both grown personally and as a couple, I do occasionally think that 26 was far too young to settle down. I don't regret getting married at that age but if one of my younger friends said to me that they were going to tie the knot at that age I would be asking them if they were really sure! Despite all my reservations now, I have to admit we were engaged within a month of meeting. We both knew we had met the person we were going to marry.

Those of you who are long term readers of my blog or who know me outside the realm of cyber space will know that life has thrown its fair share of trials and tribulations at us, like it does at anyone and I am proud of the way we have pulled together. We have had people who have tried to insert themselves into our relationship, we have had people we thought were friends  attempt to split us up. 

No relationship is ever a fairy tale, there are always things that annoy you about your partner and things that annoy them about you. I do think the most important thing to remember is that you wont change your partner by being in a relationship with them. Far too many people enter into relationships and think they can mould their partner into their ideal partner. Then over time when their plan doesn't work, the quirks they thought they were going to get rid of through marriage or just being together, start to irritate them beyond belief and it can mark the beginning of the end for that relationship.

I have always been quite pragmatic about my relationship with Jay. After a series of heartbreaks as a teenager where I worked out that some of my behaviours could be seen as obsessive, needy etc I read lots of self help books. Not about "getting a man" but ones where I would identify and work on those aspects of my character that were still quite immature. I am quite proud of the fact that at the age of 19 I realised I would never be happy if I didn't feel more confident in myself. I'm not about the whole "if you don't love yourself no one else will love you bullshit". I am more about understanding why the previous relationships had failed and there was blame on both sides. I had been devastated beyond belief with two of them ending despite now looking back and realising what a lucky escape I had!

For the three years before I met Mr Myasthenia Kid I was single, not a nun I can assure you but I was single. I had learned to be secure and happy in my own company. Sure at times I was lonely, especially when I moved away from home and lived on my own in a town I didn't know with people who were strangers to me. I know at times when I closed my front door at night, I knew I wouldn't see another living soul until I was back at work the next day. This situation didn't change when Jay and I started dating as he lived an hour away from me, we saw each other on Sundays and days off. It was really good for me to have this situation as it meant that my whole world didn't revolve around him, I had to make friends and carve out a life for myself, which I did.

It was 18 months until we lived together and even then it still felt like we were in a long distance relationship as he was working twilight shifts in another town. So he would be leaving for work at 4pm and wouldn't get home until 2.30-3am. At the time and I really don't know how I did it, I would get up, have a cup of tea and a chat with him when he got home. Because otherwise we could go days without seeing each other properly. This period of around 3 years was really tough on our relationship, it was much harder than when we were in separate towns. Mr Myasthenia Kid was permanently knackered with working these shifts in a shitty location. He was too inexperienced to stand up for himself and as a consequence had to put up with some appalling employment conditions, with god awful managers.

In around 2001, we actually worked together in the same location ( and did until I was ill health retired in 2008 ). This was a good laugh, we still didn't see an awful lot of each other as we worked a lot of different shifts. It also wasn't always possible to have the same holiday as each other. The main problem I seemed to encounter was staff not understanding that we were separate employee's and disputes with either one of us, seemed to drag the other one into it no matter how hard we fought to remain independent from each other. When working in the same store we had even less time together really as usually we only had one day a week off together. We also liked the money that working Sunday overtime gave us. Due to this we would have 2 Sundays a month together and occasionally our day off in the week would coincide. 

I know some people think I am crazy when I say that ill health retirement does have it's bonuses. At the grand old age of 47 I have spent more time with my husband than many people get in a lifetime. I see him every morning, every evening and he pops home for lunch most days. I get every Sunday with him and every day off. Last year when he was shielding I had 7 weeks solid with him and yes we are both still alive! That was actually one of the longest periods of time we have ever spent together without one of us working. Our relationship has grown stronger and stronger since 2008. At the point when I was ill health retired in 2008, I really don't think it would have taken much for our relationship to have broken down irretrievably. There was nothing that either of us had done wrong, it was just the fact that we were spending so little time together and we were both taking each other for granted a little.

We have been incredibly fortunate that despite the stresses and strain that Chronic illness has thrown our way that instead of drifting apart we have become closer than ever. I know ( this feels so weird saying it) a lot of our friends think we are their relationship goal. They want to be as comfortable in their own skin as Jay and I are together. We have been lucky in the fact that not only did we fall in love but we became each others best friend. We can finish each others sentences, quite often we will suddenly start singing the same song at the same time. Quite often we will bring a subject up that the other has been mulling over but hasn't talked about with the other. At times it is incredibly spooky.

Now that all the soppy stuff is out the way, I will quite happily tell you that there are things that annoy the hell out of me about Mr Myasthenia Kid, I am sure there is stuff about me that grinds his gears. I have mentioned previously his awful habit of getting his blue hair gel in the bathroom basin, every morning and never seeing it, so I have to clear it up. Also he never puts his hair gel away once he has used it. Daily I have to put it back on his shelf in the bathroom. The fact that he is still smoking, despite telling me three years ago, when I gave up he would. I hate the smell of it. The fact I have to tell him to do stuff repeatedly and then he moans at me for nagging! Due to my misphonia, I can't abide the sound of him eating, I know that there is nothing wrong with it. I just can't stand the sound of anyone eating or nasal breathing sets my teeth on edge and make me really angry! So I am not a barrel of laughs to live with, coupled with my streak of perfectionism he has a lot to deal with!

But somehow we work. It feels effortless most of the time. Occasionally I have to step back and deal with things pragmatically, knowing that he was like this before I met him and if he hasn't changed in 24 years it ain't going to happen now. Since dealing with things realistically and sensibly instead of blowing up like I used to life is a lot less stressful. I no longer get angry at the small stuff that doesn't matter and I don't "punish" or "berate" him for being himself. I just decided "what's the point in that". I do believe with age comes wisdom, I hope I use that wisdom. I am not perfect by any means, I am a work in progress as we all are.

Misphonia

Setting Boundaries

 I have always believed that conversations are a two way exchange of information, not a situation where one is supposed to sit their passively whilst someone else bombards you with information. Never actually allowing you a chance to say something or if doing it in message form never making you feel like your part of the conversation was read or acknowledged before they bombard you with a series of more short messages so that your phone is continually pinging and your head feels like it will explode. 

When someone treats me like this it is a massive red flag. It has taken me years to identify these red flags and I wanted to share some examples with you so that you know the sort of things to look for. They can be subtle but as a rule of thumb anything that leaves you feeling anxious, guilt ridden or just plain uncomfortable should be listened to. Don't be like me and let this go on and on. Set your boundaries and stick to them.

For example of a red flag,  what reasonable person would attempt to guilt trip you for not getting your husband to do their shopping when we went into lock-down when a) he was not in work as he was in a vulnerable category, so we are having our shopping done by friends b) you live 30 minutes away from them so it isn't a case of just dropping it on their doorstep? In typical Narc style when you offer them solutions such as their local community Facebook groups that have been set up to help people there is a long list of excuses as to why they can't access them. 

You know those conversations that leave you feeling emotionally drained? That you haven't been heard, despite your best efforts you are left feeling guilty when you haven't done anything at all wrong, other than state your boundaries by using the word no. Sound familiar? If so then you have probably been in contact with a narcissist or someone with narcissistic tendencies.

Now not everyone that bombards you with information without allowing you the chance to respond is a narcissist and sometimes conversations are emotionally draining due to the subject matter. I know that I can be guilty of talking too much and too quickly when I haven't had any contact with the outside world other than Mr Myasthenia Kid. But I am not like that in every conversation you have with me, nor am I like it in every message. I'm talking about a very specific kind of person that either a) I seem to attract or b) I have had so much experience with this personality type that I can spot it a mile off. Yet I am still struggling to distance myself from them because I worry that because I have dealt with Narcs before perhaps I "see" those tendencies when they aren't there. Narcs have the ability to make you doubt yourself even when you know 100% that it isn't you, it's them.

The problem with narcissism is that is it a massively under diagnosed disorder, so it is much more common than we are lead to believe. The reason it isn't recognised as much as it should be is  because no one gets diagnosed with something unless they visit a health professional because they believe that something is wrong with them. The issue with narcissists is they truly believe there is nothing wrong with them and it is the rest of the world that is the problem. So why would they ever visit someone to get a diagnosis or fix them?  Plus no two narcissists are the same, they may do similar things from the narcissists play book -  they are always the victim of someone else's behaviour eg jealousy, greed, abuse, poor ability to do their job etc etc Once you have been around a narc or a series of narcs you will notice how things are never ever their fault. They could be caught red handed and they will tell you to your face that it is your fault because you caught them! They never take responsibility for their own actions and their ability to rewrite history is breathtaking.

Confront a narcissist and you will be told that a) they have no clue what you are talking about b) whatever they said or did wasn't meant like that and you should let it go, c) that it was a joke or d) it didn't happen. The default setting is usually that it just didn't happen. Even if you have the evidence in your hand that shows what took place they will tell you that it didn't happen the way you think it did. This is called gas-lighting and is designed to make you question your own ability to recall events and situations. It is a way to keep you constantly off balance so that you never have the chance to question the behaviour of the narc as you are too busy blaming yourself for the events that have transpired.

Confrontation also runs the risk of narcissistic rage which if you have never been exposed to before can be frightening. They will literally lose their shit and be out for revenge by any means. There is nothing so angry as a narcissist who has been exposed, they really can't handle the fact that they aren't quite as superior as they have been making themselves out to be. There is no logic with a narcissist they simply don't believe that you have the same intellectual capacity as them and as I have already said they will deny anything you confront them with and will attempt to change the path of the argument to make it about something they believe you have done and they will end up being the aggrieved party. It is crazy making and that is the way they behave, to have you constantly doubting yourself or making you feel guilty for not doing what they want.

When you read about narcissists online you quite often see the word Grandiose however I would argue that narcissism is a spectrum, some of them do have over blown visions of themselves and expect deference from all that they meet. Others however are more subtle, some will play a game of being better than you in whatever area they like to use to make themselves feel good, so cleverer than you, more attractive than you, more friends than you, more Christian ( insert any religion here), more forgiving than you, sicker than you catch my drift?

 A classic example of a narcissist is the type I call the martyr, they love to offer you help, they will put their own plans on hold and it would appear nothing is too much trouble. Yet behind your back slag you off for asking for help and act like a martyr to anyone who will listen ( another great way of becoming the victim for sympathy).  There are a lot of these Martyr's around, if they have to point out to you all their good works beware! Most people are humble and modest they don't need outside appreciation for doing good, the act is enough.

At the heart of every Narc is a shattered ego, someone who doesn't actually know who they are, lacks empathy or understanding. They play at life adopting personality traits they think will ingratiate themselves with others. They can appear on the outside as thoughtful, kind, caring individuals but essentially it is all a scam. Once they have you in their clutches the facade will drop and you will realise to your cost that nothing you do will ever be good enough. Your needs, will never be met by them as they are far too busy sucking the life out of you.

Narcissists don't inhabit one class or group, look hard enough and you will realise that you have met at least one if not more. In chronic illness groups they will always claim to be sicker than all the other individuals in that group despite their being evidence to the contrary. They claim to be in agony 24/7 yet on their Instagram account the one they forget that you follow they post about their various day trips out or holidays abroad. If they were as sick as they claim to be they wouldn't manage half the stuff they do.For example, I had one tell me when I had my CSF leak ( and was confined to bed for much of the time) that hers was so much worse than mine but she had to get up out of bed as she had kids. What she failed to realise is that with an active / bad CSF leak there is no getting up, the pain is so intense you simply can't get up. If you do you can end up projectile vomiting for hours. Regardless of having kids or not having a CSF Leak is not something you can just switch on and off or pull yourself together from. There is no putting a brave face on a continuing with life as normal with a CSF leak. I am now semi healed from my leak but I still have days where I have leak symptoms. I am lucky many people never get to the point I am at.

Have you ever been in a working / group environment where someone is always giving you orders ( obviously your boss is supposed to give you direction)? That they want you to do all the running around yet they are the only ones capable of presenting all the information that you have researched for them and they will take the credit for. I have known far too many in work and outside work that will churn out idea after idea and will expect everyone else to do all the graft because they are just far too sick / too busy / too important to be getting their hands dirty. When you challenge them on this you are either talked down to or guilt tripped . I don't mind someone who delegates but joins in. I have an issue when someone sets themselves up as an unappointed leader and expects everyone else to do their bidding. As always the narc is the centre of everything, the queen bee, whilst all the worker bees are running around for them. Also if their plan fails it will be due to your lack of effort and nothing at all to do with them. Responsibility just ins't their thing.

They adore being the centre of everything, they lurch from drama to drama. Usually the drama is of their own making but they wont take responsibility for it. They also love creating drama between people, sometimes known as triangulation. So they will make out that they are siding with you against someone else whilst secretly doing the same with the other person. The reason you and the other person fell out is probably to do with something the narc said anyway but by the time you realise this you are in too deep and the drama has become an everyday part of life.

Narcissist also hate being corrected or "shown up" so if you point out what they are saying is factually incorrect or you point out to them that they are asking you to breach company policy / the law, they see this as a personal insult. How dare you question them, how dare you point out they made a mistake. They simply can't cope with their mistakes being pointed out so fragile are they to criticism yet they have no issue at all dishing it out. Most Narcs have never dealt with someone saying no or setting boundaries. Those that have said no or set boundaries, usually do it when first meeting the Narc, when the Narc learns that person won't be manipulated to their way of thinking they are dropped and a new person is adopted. They form friendships ( I use that term lightly as they should be called dictatorships) quickly, over sharing and appearing vulnerable so that you feel sorry for them. Their spouse is abusive, their doctors don't believe they are sick, their relative is abusive to them - again notice the pattern always the victim. It is never just one of these things but usually a whole load of people that are abusive horrible towards them. 

I want to make it clear that yes people can be in abusive relationships, yes doctors can be a nightmare - hello have you not read my blog??? but it just isn't possible that this person is always the victim. If they tell you they have a long history of people ghosting them / dropping them / disappearing from their lives without warning be on your guard. That is a warning sign that I have failed to take notice of previously. Always feeling sorry for the person that they were treated so badly. A person I knew would have these intense friendships with people, they thought this person was the bees knees. Then slowly but surely the complaints about the "friend" would start and then in a puff of smoke the person disappeared from their life, no explanation. I asked them about it once and was fed the line that people always seemed to do it to them. That people were always awful to them.......they were the victim. I accepted what they said on face value and thought poor them. Isn't the world full of really awful people, not realising that those people that had disappeared had headed for the hills as soon as they could, before they were subjected to anymore narcissistic abuse.

I've rambled on for long enough my main point is, do listen to your instincts, if they are telling you that something isn't right then it is a red flag. A word of warning though, when exiting a "relationship" with a narcissist always expect the smear campaign, they just can't help themselves and will make up any old shit to tell their gullible sidekicks. They will accuse you of the most heinous actions, they will tell people you are a thief ( yet their favourite thing to do was borrow your stuff and then never give it back), that you abused them mentally, physically etc that you are an awful human being, they will even make up stuff about your nearest and dearest. 

They will also use their sidekick to try and hoover you back in, either by making excuses for them , "oh they didn't mean to do that it was brain fog", "oh they are really sorry for the way that came across", yet they never actually manage to admit the mistake themselves, they get others to do it for them. The other one like to get their flying monkeys to do is attempt to guilt you back into the relationship " XXX is seriously ill in hospital"/ "XXX is so sad that you didn't wish them a happy birthday"/ " I don't understand why you can't just forgive XXX and get along".  When you refuse to be hoovered back in the narcs lose their shit again because they truly believe they should be able to control everyone. Anyone who isn't under their control is automatically an enemy.

The question to ask yourself is am I a gullible sidekick? No one wants to think of themselves as gullible and I will be kind when it comes to Narcs you will be charmed into believing everything they say. Yet at some point in time something won't sit easy with you. Ask yourself other than telling you something what evidence has the Narc actually provided you with? Having met the other person ( if you have) that they are smearing does what they say and the person you have met match up. Almost always your experience of the person and what the narc says are diametrically opposed. So use your critical thinking and never accept things on face value from anyone. In smear campaigns I have had some pretty awful stuff said about me and my husband and people have swallowed it hook line and sinker. Yet none of my actions or his have ever lent any credence to the lies being told. There is no proof of what the person is saying, yet their puppets accept it. 

Unfortunately the only way to deal with a smear campaign is to rise above it. Don't engage with it, don't lower yourself to their level. If people are stupid enough to swallow the lies being told to them let them carry on. The people that know you and value your friendship will know that what is being said is rubbish. There is zero point in caring about what people that don't really know you think. There will always be people in life that don't like you, what's important is to only care about the ones that do like you. Trying to fight a smear campaign will drive you crazy and will end up making you look mentally unstable playing directly into the Narcs hands. I smile knowing all the bullshit said about me and knowing that they are clueless that I know. 

Know that there is no depth to which they won't sink in a effort to look like the injured party. 

Remember in whatever friendship, relationship you have it is always ok to say no and it is always ok to have boundaries. Anyone who gets upset by that needs to be given a wide berth.

Great article where you can read about Narcs and the disorder in more depth here.

More info here from the Mayo Clinic

Wikipedia article

Good article explaining how they operate

Thank you

With Jamie’s guest blog post last week In Sickness & In Health  it brought me back to thinking about a post I wrote in May 2014 and reblogged in March 2015 called Weathering The Storm . It was good to see Jay’s perspective of things from the side of being a carer, husband and breadwinner because I do feel a tremendous amount of guilt about the way my illness has not only impacted my life but of his also.

It was lovely getting feedback from people who see us in the real world and from those who only know us through the internet. Not that I want or need outside validation to know that I have a wonderful relationship with my husband, as quite frankly I find it incredibly hard to accept compliments or to “see” what others see in us. To find out your relationship is an inspiration to others is obviously very nice but it also feels quite strange. I have never seen either of us as any kind of role model. It is a really weird situation to explain without sounding like an ungrateful twat and that couldn’t be any further from the truth. I am truly grateful (as is Jay) for everyone who took the time to leave comments on Facebook and on the blog post. We were both very moved by the things people wrote, so we want to say thank you for that.

The thing is Jay and I don’t think we are anything special, we just work. We are very similar in our outlook and sense of humour. We both mean the world to each other. Neither can imagine life without the other, when I think of family he and the dogs are it. When something good or bad happens he is the one I want to tell first but to me that is how any relationship should be. I suppose it seems strange because I know we aren’t one of those couples that are constantly doing PDA’s (public displays of affection), we never have. We are by nature quite private people, which is hilarious when you think about it in connection with my blog. However like any blogger or anyone on social media there are things that you don’t share because you still want a level of privacy and to have something that is yours and yours alone.

I wrote a lot about the guilt I felt due to getting sick back in 2014’s Weathering The Storm, things have changed a bit, I still feel pangs of guilt but not on the level I used to. I know that I didn’t do anything to cause my predicament or to deserve getting sick. It is just one of those things that happens. I did feel very guilty last year due to the amount of stress that Jay was under due to my CSF Leak and the amount of time he had to take off work at short notice. I worry about the impact it has on his career and his standing amongst his colleagues yet they were the ones who took the time to praise him for his blog post. That meant a great deal to both of us and reassured me that at least in his work world, he isn’t thought any less of due to me.

I am lucky I have a partner who will stand by me through thick and thin. I know he loves me, he tells me everyday and I tell him the same. We had so many plans before all this happened and it’s only in the last few years we have been making plans for our future again. Until a few years ago I could see no future and no point in planning anything long-term. He has taught me that plans can always change no matter what the situation but it always important to have plans, dreams, aspirations rather than always being focused on the here and now. Even when things were really dreadful last year and I was confined to bed for much of it (due to a spontaneous CSF Leak) we would talk about going on holiday, about fundraising for a new wheelchair etc. Even if those things seemed nothing more than a flight of fancy at the time, they are what kept us both going.

I think a lot of the strength of our relationship comes from the fact we have shared hopes and dreams. We aren’t working against each other but together for common shared goals. A relationship is the biggest feat of teamwork you will ever take part in. We work together because we want to be together come what may. And whilst we have both had utterly crass and insensitive things said to us over the years, as in “leave / walk away, this isn't what you signed up for” or “If you were my wife I’d leave you”, we haven’t taken it personally. Rather we have felt a deep sympathy for the partners of those who have said those horrible things. Wondering if they knew that they were once accident or illness away from having the love of their life abandon them. It never crossed Jay’s mind to leave and if the shoe had been on the other foot, it would have never crossed mine either. When we took our vows we meant them, they weren’t said with our fingers crossed behind our backs in case anything ever changed. We aren’t like that and can’t understand people who are. I really do think those sort of people are in the minority, well I hope they are.

So from both Jay and I we just wanted to say thank you, to everyone who read the blog post and to those of you who took the time to leave a  comment. We read every single one and they all meant a great deal to us. Jay has promised that he will write another piece in the future, again the subject matter will be entirely down to him.

Thank you from us both and of course the dogs.

In Sickness & In Health

A guest blog post from my husband Jamie (aka Jay).

Jay has been saying that he would write a guest piece for around a year. Well I have finally pinned him down. The first time I read it was when he handed it to me ready to be typed up onto my blog. I won’t lie some of it moved me to tears. He is a typical bloke who quite often doesn’t say what he’s thinking or what’s worrying him. I know he loves me that much is clear but I am so proud of him for writing this piece and introducing himself to my readers. So here it is…..

Hi,

I’m Jamie. I am 43 years old and I am married to Rachel. You may be a frequent visitor to her blog and while you are all probably well aware of our dogs (as understandably so) they get more blog time than me, you may not know much about me.

I met Rachel in 1997, whilst we were both attending a management training course. I knew from the minute I met her she was going to play a massive and pivotal role in my life. We were engaged around one month after we met and I moved in with her the following year.

We were married in 2000 in Sri Lanka. An incredible setting for such an important moment in our lives. We eloped and our trip to Sri Lanka was not only our Wedding destination but the first time we had been abroad on holiday together.

Three years later we purchased our now home and lived happily ever after…….

The End.

Well not quite. You see regardless of what happened then to her health, nothing changed for me. She is still the same incredible person.

A lot of people told me to “walk away” or told me “this isn’t what you signed up for”. However what I signed up for, was to spend the rest of my life with my lover and best friend. And that is what I am doing.

Others have said to me “oh being a carer and working full-time must be so exhausting”. My answer is “No it’s not. She is there when I wake up and there when I return home from work.” During all the visits to the doctors / consultants, guess what? We are together and we talk for hours. In fact it doesn’t matter how bad things get, she’s always talking! We rarely even listen to music in the car because every journey is filled by the sound of us laughing and chatting. So don’t feel bad for me. I have the best life there is, spending so much time with my amazing wife.

Yes there are up’s and downs. Occasionally I get very stressed out because she is so unwell. Sometimes I need to take emergency time off work to look after Rachel and I have to say work have been fantastic in supporting me and looking out for my mental health.

Rachel has supported me selflessly over the years. She has supported me as I have grown as a person and as a husband. She has always been there for me, as I have been there for her.

Yes I make mistakes, I leave the toilet seat up, smear shaving phone on the mirror, leave blue hair gel in the bathroom sink and I undercooked a pizza once. I also promised to write this blog post last week when I was on holiday from work but instead found myself overtaken by the other love of my life my PS4.

Through all the bumps on the road of life, we know and understand each other better everyday. In February we celebrated 20 years together as a couple, this September we will have been married 17 years.

So that’s about it, short and sweet I know but not a downbeat, oh woe is me post. I couldn’t be happier. I do hope you’ve enjoyed my blog post and that you will continue to support my wife’s blog.

As I said in 2000, In sickness & in Health.

Unbroken

Back in December 2016 I wrote a blog post called Broken, which you can find here - https://themyastheniakid.com/2016/12/15/broken/ in case you missed it.

I was writing about a friendship that had reached breaking point. Although by the time the piece was written, we had discussed the situation and apologies had been made and accepted, I wasn’t sure if I could let the anger go and be able to move forward, to be honest at that point I wasn’t even sure if I wanted to. We had talked but all it had done was make me angrier, probably because I had kept quiet for so long that I was now truly having to deal with all those suppressed feelings. I knew for our relationship to continue I had to deal with that anger and effectively let it go. If I didn’t there would be no future in our friendship because I would be forever looking backwards and not forwards. In working through that anger, I became more sympathetic and understanding of the whys and hows this had all come about. I had to shoulder some of the blame for the situation because I had been blinded by my own anger, I couldn’t see the person before me was desperately unhappy and broken.

It took time (I know we are coming to the end of March so it hasn’t been masses of time) but my friend and I are back to where we were before this hiatus. When I wrote the first piece I didn’t know if we would ever get back to where we were. However we are back and actually better than we have been in years. All it took was an honest conversation, one that so many people shy away from and act emotionally rather than rationally. This means looking at the good, which was 98% of the time in 20 years and understanding that 2% was out of character and down to a horrendous amount of personal tragedy.

I am not saying every relationship can be saved, nor am I some sort of tree hugging hippy. There are times in our lives when you have to say for the sake of your own mental health enough is enough. Sometimes people cross a line, their words or actions can’t be forgiven let alone forgotten.

Toxic, unhealthy relationships should be terminated at the earliest possibility. Far too many of us give abusers (because that is what they are, they abuse our friendship, our trust, our dignity) excuse after excuse for their behaviour, we take on the blame (and possibly shame) that should be squarely planted at their door because we are people pleasers. People like that though are never pleased by your actions they will always find fault, they are emotional vampires, sucking you dry and tossing you aside when you are no longer any use to them or they have begun to suspect that you are starting to see them for what they are. That was never the issue in my friendship but I have had other relationships where this has been the case.

So not all relationships can be mended and I am not pretending that they can. Sometimes it is far healthier to just call it quits, sometimes people outgrow each other or want different things from life. I realised that this wasn’t the case with my friendship, yes I had been hurt but I had to take a long hard look at the last 20 years and ask did the good outweigh the bad? Once I had accepted that there was more good associated with this friendship and this person was one of the few that had stuck by me since getting sick, the anger started to dissipate. I won’t lie the first couple of meetings after our discussion were a little awkward, we both felt it and openly talked about it. We looked at ways that it could be made less awkward, we discussed that it was probably the need for time to pass and the need for more regular meet ups that would solve this. The whole point was that we came at the solution together so we knew that the relationship meant a great deal to both of us, it didn’t feel like one person was doing more than the other, which can lead to resentment.

I am no longer angry about the things that happened before and I am not holding onto any grudges. I have let all of that go, it was a natural process not something that was forced. When we started talking more honestly and openly things improved rapidly. It wasn’t easy for my friend either, there were times when they needed reassurance. They needed to hear from me that things were back to normal, I couldn’t expect them to read my mind, it had to be said out loud, so they knew what I was thinking and feeling.The words need to be spoken and assumptions not made. We are back to enjoying each other’s company and there is no anxiety for me anymore as there had been previously.

I have learnt a great deal from this experience, I have never previously bothered mending a friendship that I believed was broken beyond repair. Before I would have just cut this person out of my life without a backwards glance. This has shown me that some relationships are worth working on and saving, rather than taking the easy option and avoiding confrontation. I know now that I should have spoken up sooner rather than let things fester. By failing to communicate I was as much to blame for the friendship floundering. I now know that it is far better to voice concerns than hold onto them. There will be bumps in the road, there always are in life but it’s how we address those bumps that matter the most.

We have come a long way since my blog post in December last year but things have definitely moved from broken to unbroken and more beautiful than before.

An expensive habit

I thought I would do a lighter post for a change, plus I am still pretty wiped out after contracting shingles. The rash is almost gone now but the virus launched a full-out assault on my body.

For quite a few years I have been collecting Emma Bridgewater Pottery. I blame my mum as until she told me about it, I had never heard of it. My collection started off with just the one mug and has exploded since then. Initially I collected mugs, most of the time I used them rather than keeping them on display. In December I accidentally clicked on an Emma Bridgewater group on Facebook whilst looking for something else. I call it fat finger syndrome. Unfortunately it has been an expensive but enjoyable mistake. I have also managed to get hubby into it, which is great as now he takes great pride in our collection and cleans it on a regular basis. Our lounge has never been so tidy.

It started off after Christmas when we had some money as presents. We decided this year we would buy ourselves something nice after all the shit we had both been through during 2016.

The great thing about the jug is that now hubby buys flowers for me or it every two weeks as it looks so beautiful with a bouquet in it. I have never has so many bunches of flowers bought for me since it arrived. We first discovered the wallflower pattern when we got a personalised mug for our friend (and adopted daughter - that’s a running joke as she could be our daughter due to our age. Quite handy too as her mum and dad did the hard work bringing her up. She calls Jay Dad and me Mum which can be confusing for people who don’t know us.) I actually wasn’t 100% sold on the design but when Imogen opened it, it was so pretty we fell in love with it.

When Imogen’s mug arrived we were also sent a catalogue, I had been eyeing up the Christmas Nativity Plates and the matching mugs but couldn’t justify the price. In the sale the price was greatly reduced and as I bought seconds rather than firsts it was cheaper again (seconds have minor flaws).

I posted this photo of the mugs on Instagram and Emma Bridgewater got in contact with me asking if they could use the photo on their social media. I was chuffed to bits as I studied photography for about six months at University. It was an optional part of the media studies part of my degree and I really enjoyed it.

The plates I also loved but again couldn’t justify the price before the sale. I picked up a real bargain.

After seeing the plates / mugs / jugs hubby was well and truly captivated. He was now also looking at the sale site and earmarked a few items he liked. As we would be celebrating 20 years of being a couple on February 14th 2017, he wanted to mark the occasion. He decided this would be a fantastic way to celebrate.

For some reason Jay and I both love having personalised mugs. In the days after our friend passed away we were lost. To cheer us both up I bought us a personalised cocoa mug each as we both like drinking humongous cups of tea. The cocoa mugs hold about ¾ of a pint, which is brilliant and it reduces how many cups I need to make.

My cocoa mug is in a design called Sampler and is in dark pinks and reds

MY MUG

I got Jays in a pattern called Polka Hearts. He was chuffed to bits when his arrived

Jays mug

We don’t collect specific patterns but whatever takes our fancy, its more of a magpie approach but we love it. It is something that we both can share and enjoy together

Dresser

Rose & Bee Personalised mug

Folk Border Mug

Liberty Of London Emma Bridgewater Mug

Broken

For the last few weeks I have been left wondering how you fix something that seems broken beyond repair? How do you move past the anger and pain? How do you get to a new normal? I am left scratching my head trying to work this all out. I have had to deal with so many broken things, body, mind and relationships that have fallen by the wayside. When do you say enough is enough?

Before anyone psychoanalyzes this one, hubby and I are fine, perfect in fact. This year he has provided me (as he always does) with unwavering support through this difficult year. I can’t thank him enough for that. There have been days where he must have been almost hysterical with fear because I was so sick but he stayed strong. He made sure I knew I could count on him when the chips were down and there aren’t many people these days that I could say that about.

For 9 years I have had to deal with a broken body (well since birth but it really raised its ugly head 9 years ago) and on the whole I am fine with that. Of course there are days when I ask “Why me?” or I think that I can’t possibly go on but I do. I can forgive myself those moments of weakness or perhaps vulnerability is a better word. Even though pain wise this year has been horrific I am still managing to do things to make myself happy and enjoy life. I think that is something to be proud of.

I have in the last nine years had to deal with many broken relationships. People I thought would be friends with forever have dropped by the wayside but not before treating me like crap. I should take some of the blame here, not because of ill-health but for allowing people to treat me that way. I am an incredibly loyal friend and will excuse bad behaviour up to a point. However at some point a line in the sand has to drawn, it just I can take a bloody age getting there. When I do though the fallout (pun intended) can be catastrophic, people don’t like being confronted with their bad behaviour. I am not for one instance say this believing I am perfect, I am not. When bringing up the subject I always say “I am sure there are things I must have done that have annoyed you”. I give them the opportunity to address issues so it’s not one-sided because if things are ever going to be put right the exchange has to be honest.

Maybe because by the time I deal with the situation there have been a series of events, such as not contacting me unless I contact them, not coming to see me (I can’t go to see them as I am virtually housebound although I would love to), being rude or overly critical etc, etc I have the examples to hand, they are on the back foot unprepared for the conversation? Because for so long I have let things slide and given them the benefit of the doubt. I know that something must’ve happened for them to change the way they have treated me. However from my side it seems the more I do for someone, the more they expect, then because I am forever trying to please them, I get taken for granted and the friendship gets abused. My inability to nip bad behaviour ( what else can you call it?) in the bud seems to give them the green light to walk all over me.

I hate confrontation with those who are close to me, I am too worried about hurting their feelings that I end up not expressing my own. I wonder if it is because of all the bullying I faced during my childhood that I don’t want to rock the boat and tell the person what they are doing is not ok? I can be loud, brash and seem to have endless self-confidence but really I am an anxious hot mess a lot of the time. I worry over stuff that shouldn’t be worried about, I worry late into the night about things that haven’t happened, I can get into a rut of worrying that can be a difficult cycle to break. I know it’s not healthy to be anxious or to be afraid of expressing what you want or need. Most of the time I am not worried about what I will say but what will happen once it’s been said, as the words can not be unsaid. I should however start putting myself first and starting from now that is exactly what I am doing. I will no longer have people riding roughshod over my feelings in an attempt to make themselves feel better.

At the moment I am only filled with anger, I know that is clouding my judgement. The extent of the anger only reinforces the hurt I have felt and the fact that I do care deeply about this friendship. If it had been anyone else they would have been told to go once this pattern of behaviour seemed to establish itself. I have asked myself the question over and over did I do something to deserve this? Have I ever done something to deserve this and does it make me a bad person if I cannot think of anything but the times I have bent over backwards and supported you?

In some cultures when an item is broken like a china bowl, they fill in the cracks and cover the repair with gold leaf, to make it unique and more beautiful than it was before. I wonder if that is possible with human relationships as I am not without hope on rare occasions.

So I find myself now in a situation where the conversation has been had but now I am unsure of where we go from here. It no longer feels the same which is something I never thought I would say. Do I concentrate on the good times which account for 98% of the time and ignore the 2%? Is it worth resuscitating, this hollow corpse of a friendship, which it has been for a while or now because apologies have been made do we forge a new relationship? I am unsure that I want to open myself up again to the risk of being hurt so badly, picked up again only to be dropped when something better comes along? Do I try to forget what has happened or do I forgive but never forget? Does shared history count for anything? Is I am sorry, enough?  When is it broken beyond repair?