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.

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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 as 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.

 

wallflower-jug

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).

 

nativity-mugs

 

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.

 

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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

teapot

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

sampler-cocoa-mug

 

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

 

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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

Lounge Dresser

 

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Rose and Bee Personalised Mug

 

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Folk Border Mug

 

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Liberty of London Emma Bridgewater Mugs

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?

The Riot Act

I got read the riot act last week on the first day of Jay’s (hubby’s) holiday. I was informed I was not allowed to use the word “sorry”. You see I use that word an awful lot, not a day goes by when I don’t find myself apologising. My husband can’t stand the fact that I am continually apologising for being sick, he was determined that I wasn’t going to apologise for being chronically ill for the next nine days.

 

To be honest when he started on his rant I was a bit concerned about what he was going to say. He is my rock, my best friend and soul mate. What had I done to make him start a rant first thing on a Sunday morning? You see we don’t really full on row very often and when we do it is normally started by me. We bitch and bicker, with some light-hearted banter thrown in for good measure, so when he started up, I wondered what the hell was coming next. I know to some I am a millstone around his neck, destroying his life. They would have walked away and filed for divorce if they had found themselves with a sick spouse. You would be surprised at how many of those people are around. I have read numerous articles based on studies that have shown a husband is much more likely to leave a sick spouse than the other way around.

 

I almost burst out laughing when he said “I don’t want you to apologise for anything whilst I am off. If you need to lie down, you go and lie down, if you need to spend the day in bed, you do that. I just don’t want you saying sorry. You’re sick and you can’t help that, so please don’t say sorry because it breaks my heart that you feel the need to have to say that.” I was very touched by him saying this. Getting sick has left me feeling very insecure, unworthy and basically less of a fully functioning human being. I feel guilty all the time regarding the stress I cause him and the fact that our dreams for the future have been shattered. It would be very understandable if he felt resentment or frustration due to the situation we find ourselves in but he never blames me.

 

I have been apologising much more than normal of late. There is barely a day that goes by when I am not having to go to bed for the night at 18:00, ridiculously early for a grown up. It means that when he is working we spend very little time together, which isn’t ideal. On his days off I have also had to have a lie down part way through the day, or ask for numerous hot water bottles to be filled whilst I lie head in hands because my head feels like it is about to explode. It makes normal life practically impossible but at the moment it is the only way I can manage.

 

I don’t just find myself apologising to him, I apologise to everyone continually. It seems I have a guilty conscience about everything, missing phone calls, forgetting to reply to text messages and generally being really crap at keeping in contact with people. I am lucky that my friends don’t take it personally they know that my brain is fried at the moment. They know currently that there are more bad days than good. So if they don’t hear from me properly for a few days, I am trying to get my shit together so I have the energy for a proper conversation.

 

I have never been very good at pacing myself, when hubby is home I will push myself to the limit. Before this suspected cerebrospinal fluid leak started I was never very good at having enforced rest periods. Now there is no choice as to when I have to lie flat and do nothing because the pain won’t let me push on through. I know after a couple of hours I can get going again but the amount of time I can be upright declines with each period of intense pain. By the end of the day I am lucky if I can sit upright for more than 30 minutes before I have to admit defeat. I used to be able to just lie down on the sofa but now things have progressed to the point where being completely flat lying in bed relieves the pain. You feel so stupid after a while because the head pain has gone but the minute you sit up its back and on occasions it can feel like someone is attacking you with an ice pick being plunged into the back of your skull.

 

Thankfully over his time off I have had a few good days, where we have been able to catch up on some TV shows that we like watching together. I have also been able to spend some time with my nephews and my parents, thank goodness for reclining chairs. Without them I would have had to give up and go home after an hour. I realise now I should have been more grateful for what I had because I am now very thankful indeed for the small amount of time I can sit upright like a normal person. We have enjoyed each others company whilst he has been on holiday and I know when he returns to work for the first few days I will be dreadfully lonely.

 

Whilst he has been off work we have been discussing various schemes to help raise money for my go fund me campaign – help me walk the dogs again. Hubby has volunteered to have his back waxed in the hope enough people will sponsor him so that he can raise a couple of hundred quid. He had his leg waxed a few weeks ago to raise money for his company’s charity of the year and he nearly brought the store to a complete standstill with his cries of pain. You see he is a hairy boy and he knows how very much that this will hurt. If I had any doubts that he truly loves me regardless of my ill-health, I have none now.

 

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Hairy boy!

 

When the event takes place I will post a video as part of my blog. We have yet to organise a date for this to take place but it will probably be next month. We do have the beautician sorted for it though who is doing it free of charge.

 

We talk continually about the day that I will finally be able to accompany him whilst he walks the dogs. We know we are a long way away from raising all the money we need even with adding all our savings into the mix. Currently this dream is the one thing that keeps me going. It may seem strange that we are trying to get me some mobility equipment whilst I am currently struggling to spend much time upright but I have to live in hope that the situation will be resolved and that I will be able to get outside and enjoy myself. No matter how long it takes to raise the money or get my suspected leak fixed.

 

Jay has been exceptionally busy through his holiday. He has painted our porch (more of an overhang), fallen off a ladder whilst painting said porch, bringing all our neighbours out of their houses to check he was OK. Thankfully he was. With my mobility issues I was the last person to the scene and again I felt terribly guilty. What if he had really hurt himself, how long would he have been there lying on the ground without me? I know how much he hates heights so he was very brave to get on the ladder. Hence there will be no abseiling, skydiving or bungee jumping to raise money for me. I’m just not that cruel….or am I? Although bless him he is considering running a half marathon again and he loathes running.

 

We have also spent quite a bit of time sorting out the garden. It is only small but we really wanted it to look pretty this year with flowering plants that would be around all year and not die as soon as it gets cold. We have planted lots of flowering herbs and at the last count the garden contained close to 40 pots / hanging baskets. We are very proud of the garden

 

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Curry Plant , Mint and then Hyssop in the left hand corner.

 

I have a bed which I can lie on out in the garden so it is nice for me to be able to spend time out there increasing my vitamin D and get some fresh air after being cooped up all over winter.

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Basket filled with trailing Rosemary and Indian Trailing Mint.

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Chives

Of course on several occasions during the week I have said sorry. Sorry that I was going to bed as my head was hurting, sorry I was going to bed for the night at 4pm, Sorry that we hadn’t done the things we had planned. I love him for telling me not to say the s word. He knows that none of this is my fault but I can’t help feeling I am to blame. We have so much pinned to this appointment on 22nd June, we just don’t want to be fobbed off or discharged with no clear way forward. I don’t want to have to say Sorry for a wasted journey, sorry that you have been so stressed out.
I am glad he read me the riot act on the first day of his holiday, it assured me that he knows how guilty this situation is making me feel. That he knows me so well, that he knows that I will soldier on until I collapse rather than feel like I have let him down (not that he has ever said that or that I have done it). We aren’t a couple that professes our undying love all over social media, after 19 years together, if we don’t know that we love each other it is a bit of a poor show. We tell each other all the time how very much we love each other. So although he already knows this I want to say – “I love you Mr Morris” and “Thank you” xxx

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P.S

Happy 40th Birthday Lucy – 9th June 2016. xxxxx

Weathering the storm – keeping a relationship strong

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

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


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


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


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


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


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


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


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


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


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


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


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

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

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

That’s how we are weathering the storm together.