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.