The guilt at being happy

Those of you who read last week's blog post will be happy to know there have been no further Sula Drop "incidents" since the one described by last week's post.

Guilt is something I deal with on a daily basis. I feel guilty about most things. I feel guilty that I can't do as much as I used to in the house due to my medical conditions. I feel consumed with guilt that our lives haven't gone the way that we had planned them to go. At the moment I am being eaten up with guilt because for the first time in week's I feel happy. I worry that people will think that I didn't love Frankie and Mollie or didn't love them enough because now I love Dembe.

I catch myself sometimes in a negative cycle of self talk telling myself that it is not possible to love another dog so much already if I truly loved the other dogs. I know that what is amazing amongst human beings is our capacity to love even when in the depths of despair. The love I feel for Dembe is different to the love I had for Travis, for Frankie, for Mollie or for Willow. Each of those dogs I loved differently but with the same intensity. I never felt the guilt of having Frankie and Willow after Travis passed away because they were born in the house, although Frankie was sold and came back to us. So I don't get why I am struggling with the guilt of having Dembe?

Is the guilt stimulated by the fact we had to go out and buy him from another breeder? Rather than him be born in our spare room? I feel it acutely at times. Just looking at Dembe on occasion will reduce me to tears because looking at him reminds me of what we have lost. 3 dogs in the space of 55 weeks. That is a lot of loss to deal with, on top of the human losses we also suffered. 

I also feel guilty because my anxiety levels have dropped since Mollie and Frankie passed away. I knew that they weren't long for this world even though you hope in your heart they will last just a little bit longer. Frankie had rapidly declined over the space of the 12 months and I am now pretty sure that the inner ear infection Mollie had in the summer was her first stroke. Purely because the symptoms the day before she passed were exactly the same.  Both dogs were spoilt rotten in the last 12 months of their lives. They really enjoyed themselves. We had hoped Mollie would have a good six months after Frankie passed but it wasn't to be and that breaks my heart. In the days after Frankie passed I made such a fuss of her, plied her with sausages like they were the elixir of youth. I feel guilty that perhaps I didn't see how much she was grieving for her son. The vet certainly felt that the grief was a contributing factor in her catastrophic stroke. 

My anxiety levels have dropped also because Frankie was having some quite bad mobility issues. At night I would never sleep very deeply because I was always listening out for him in case he fell or he couldn't manage getting back upstairs after going down for a drink or to let himself out into the garden. Because Dembe is younger he doesn't get to roam around the house at night or even during the day. He can't yet manage the stairs so he is confined to my room at night by a baby gate.

I would talk about the day that we wouldn't have the Weimaraner's anymore and it always seemed like some mythical date in the future. Even though I could see them ageing and losing condition I must've practised cognitive dissonance because on another level I couldn't believe we would ever lose them. They would live forever in our little bubble, being loved and returning that love tenfold.

Now I get anxious about loving Dembe too much in such a short space of time. I still look at him at times and have to remind myself that he is mine. I wouldn't be without him, he is a devoted pup who loves Jay and I equally. Today at a friend's place Jay was training Dembe in the garden and Dembe was so totally focused on him. All this little dog wants to do is please us, be loved and be fed the occasional piece of cocktail sausage when he has been a good boy. If we had tried to do the training with the Weims they'd have put two fingers up and walked away. We loved the Weims for that, they were so independent, free thinkers, the hooligans we used to nickname them - in a loving way. The relationship we have with Dembe is so totally different, he lives to please and be told he is a good boy.

He has a lot of traits like the Weims had, he is almost like a mish mash of all their characters. He reminds me a lot of Frankie the way he is such a mummy's boy, the way he herds me ( nudging the back of my leg with his nose) when following me into another room. The way he has to be with me the majority of the time, although Frankie would have never climbed into the shower with me, Dembe does this frequently. The girls however would regularly poke their heads around the side of the shower when I was in there. Willow was the most adventurous and would come in and have a drink! She was the water baby out of the three, she would run to the pond on the common and dive straight in for a swim. She always looked like a human when she was swimming due to the way she held her head out of the water. I always imagined her with one of those 1970's  swimming caps covered in flowers. 

I am glad that we decided to change breeds after the Weimaraners.  Weims will always have a special place in my heart, too many years involved with them not to. I have owned 4 plus 18 puppies were bred from Mollie over two litters. Life without them is strange. However my eyes have been opened to the world of Labrador's now and although I know each dog has a different character, I love Dembe's character. I can't get my head around the differences in breeds of dogs. I was quite ignorant before and just thought all dogs were pretty much the same. We have gone from hosepipe / shower averse Weims to a dog we can't stop getting wet at the slightest opportunity. In the shower no problem I'll join you mum, got the hose pipe on ? I need to chase that and bite the water. He has us in stitches every day.

I guess guilt is just part of my makeup, I have always been this way. I feel guilty about stuff I haven't done. I think it comes from a sense of always being in the wrong, even though that is untrue I always felt that way. I always doubt any decisions I make for fear of getting it wrong. Now I am trying to break that habit, I know the guilt is just a stage of grief. I have been through it with every dog I have ever lost. With Travis for years I felt guilty that we had given up on him - despite being told his kidneys were failing and that he had less than 12 weeks to live. I felt the same way about Willow, not noticing how poorly she was quickly enough - neither of us did and the vet told us how stoic our dogs were and didn't show any signs of illness until at deaths door. I felt guilty after Willow had a closed Pyometra despite taking her to the vets in the preceding weeks saying that there was something wrong with her. I felt the same guilt when she had breast cancer, even though the vet told us he was surprised that we had felt such a small lump.

See how the guilt eats at me. Even when I make the right decisions for my dogs or discover something early the guilt starts that I could have been better, spotted it sooner. It is a pattern I am trying to break but its hard when this has been your thinking pattern for over 40 years.

Although I was terrified of what people would say about us buying  Dembe so soon after Mollie & Frankie passed away, even though I knew it was absolutely necessary to preserve Jay and my sanity. Unless you have lost two dogs within a week you aren't in a place where you can judge. You never know what you would do until you were in that position. I now no longer care what people say about it. 100% it was the right thing for us. 

Whilst I struggle with the guilt of loving him so much,  I am a work in progress. I am learning to deal with the guilt of being happy again.

Hoping for a quiet 2019

My last post was published on the 10th of January when I felt like my whole world had caved in. The last few weeks have been very hard, I miss Frankie and Mollie so much that my heart aches. There has not been a day that has gone by where I haven't wept with the pain of losing them as suddenly as we did. To lose two dogs in 7 days is something I wouldn't wish on my worst enemy. I wouldn't have got through it without hubby by my side. In fact I would have probably given up completely had he not been here.

Due to the shock, upset, grief hubby has taken some time off work. He already suffers with anxiety and depression and to ensure he didn't take a nose dive he saw the doctor and got himself signed off. He didn't want to see anyone or talk to anyone. Losing Mollie hit him very hard as she was his dogs. Plus it was very traumatic for us over 24 hours where it became clear that she had suffered from a stroke and there would be no recovery from this. We nursed her overnight and made sure she wasn't suffering. Right up until the end she only wanted her dad, whenever she was out of his sight she panicked. Jay stayed with her until the end as I had stayed with Frankie just the week before. To say our hearts were broken would have been an understatement.

I took a break from this blog as since the beginning back in 2008 the dogs have featured quite heavily in it. My Gravatar is me with Frankie, Frankie is the banner on Wordpress, on Twitter his photo is my profile picture and its the same on Facebook. Although I have managed to change my about me pages on both blog platforms, I can't remove his photo from any of my social media profile photos.  It feels like a huge chunk of my life has just vanished. Life as I knew it was taken away from me in the space of 7 days. I never knew I could feel so utterly broken by the passing of three dogs in just a little over the year.

For a few years Mr Myasthenia Kid and I had talked about what would happen when we no longer had any dogs. Initially we had said we would get a Labrador ( black) then we talked about a Beagle and also a Bracco Italiano. However for the last few months I had said I didn't know if I wanted another dog, I knew losing our last two Weimaraners would hit me really badly and by getting another dog meant at some point in the future I would have to go through the pain of losing it all over again. Jay was not having any of it, he said that I was already completely socially isolated and without a dog I would have no company at all. He felt it would be very damaging to my mental health. He was right, as 7 days without a dog in the house were the worst thing ever. I missed everything about having a dog, the cuddles, the mess, the unconditional love, someone to have silly conversations with.

By the Sunday after Mollie's passing we decided that we would get another dog and we started looking on-line for Labrador puppies. I had to give myself a crash course on Labrador's having not ever owned one. I located several breeders who had litters on The Kennel Club Website. Luckily one lady immediately responded to my email and told us she had two male yellow labs for sale. Obviously we had originally said we wanted a black lab but by this point it didn't matter what colour it was. We needed our house to feel like a home again, we were both distraught and sinking fast. We arranged to travel to see the 2 pups available the following day.

The rest is history, we now own a 9 week old Yellow Labrador called Dembe. We chose his name from the TV programme the blacklist, it means peace. Which you will probably agree we need by the bucket full. Dembe came home with us on Friday 11th January. You can read all about him   here as I have started his own blog for him. I will from time to time have photos of him on this blog but it is much easier to have all the news about him on a separate blog. Every Monday I will give a run down of what he has been up to the previous week. 

Some of you may be judging us, that we got a new dog too quickly or that we didn't love our other dogs that much because we replaced them with Dembe. Dembe is not and has never been a replacement. He is an addition to our household. He is very much-loved for the dog he is and will become. Anyone who thinks any less of us for this can just fuck off as far as I am concerned, your opinion is of very little value to me.

So whilst I took a break from here, I have been setting up Dembe's blog. I managed to keep writing which out of all the things I do creatively was the only thing that I could keep going. I hadn't been able to sew since Mollie passed away. I managed on the 16th January after a break of nearly two weeks to sit and do a small piece of embroidery. Mainly to ensure that Dembe wasn't scared of the noise the machine made. The only thing that has freaked him out so far has been the ironing board and it does the same to me if I am honest.

My health has been hit quite hard by the sudden turn of events. I have suffered vertigo, continuous headaches, back spasms, Eczema, migraines and ptosis. As usual it a few days after the event before I started to go down hill. Thankfully with Jay off work we have been able to manage Dembe's care and socialisation process. To be honest without him I would have crawled into bed and never come out again. This little chap has saved us both. The lady that we are friendly with at the vets ( who had a soft spot for Frankie) called Dembe our miracle dog. She knew how much our lives focused on our dogs and also knew that without a dog in our life we would fall apart. 

So many people have told us that we have done exactly the right thing. It doesn't mean that we loved our Weimaraners any less, it is because we loved them so much that we had all this love to give to another dog. 

Dembe has bonded with us both. He is such a happy, laid back dog. His tail wags continuously. Everyone who meets him falls in love with him. I thought at one point after Mollie had passed away that Jay looked like he was going to drop dead from a broken heart. He was just an ashen colour. I have seen Jay poorly many times but this was the worst I had seen him look for a long time. Since Dembe's arrival he is looking so much better, we both feel like there is a future in front of us. In the immediate aftermath of losing both dogs it felt like we were staring into the abyss .

I am hoping that my health stabilises shortly, it is going to have to as Jay goes back to work from Monday 21st and it will just be me and Dembe. However Jay will be coming home at lunch times to help with feeding and toileting. He still has a few weeks until he will be able to go out for a walk. Whilst Jay is home though I am trying to take it as easy as possible. Jay has been doing everything for me as usual.

2018 ended in a way that I didn't see coming and 2019 started in a way we never envisaged. All I can hope for is a quieter year for the rest of 2019.

I will never forget the love that these three beautiful loyal dogs gave me. Run free my darlings, we will miss you everyday for the rest of our lives.

Cr*pfest

This piece was written ready for last week’s blog post, on a day where I had a couple of hours of relief from the pain. I always like to take some time away from a blog post before editing it. When the time came to take a second look I was too sick to do it. This week I have been a bundle of nerves as I am off to see the neurologist later on this morning. By the time you read this on Thursday 23rd June that will have been yesterday!

This week has been a total crapfest bar one day, a week ago Wednesday when a friend popped over. It’s a couple of hours like that which keep me going even if it means collapsing into bed immediately after they leave. I basically went to bed on Wednesday afternoon and then barely left it after. Sleeping the majority of the weekend away as I was so worn out from the pain.

Photograph courtesy of Heather Rowe

I will be honest I have been playing fast and loose with this of late, pushing back against the headache so that I may get a few more hours out of bed. This never ends well as it exacerbates the pain and leaves me worse off than I would have been if I had just laid down when the pain started. Denial has always been one of my biggest issues. 

Even 9 years on I still can't get my head around the fact that I cannot do the things I once did. It is as if my brain refuses to accept that things have changed and will never be the same again. This causes problems for me with people understanding how disabled I actually am because I continually downplay the crapfest which is my life and I “don’t look sick”. Although with this suspected CSF leak I am starting to look the part when the pain is unbearable.

Due to my continual denial to the outside world, people who haven’t read my blog (mainly medical professionals), are completely clueless to how much my life is affected and consequently I have got to the stage where I am begging for help and it seems like no one is actually listening. I have emailed the people at my local council for help because I need equipment such as a commode for my bedroom for when the pain is so bad it’s a struggle to get to the toilet, a table that can go over my bed, just basic things really that would make the world of difference in a limited situation. Asking for help goes completely against my nature, so this year I have decided it is time to go big or go home.

The other day I caught myself thinking "I'd love to go for a run", which is hilarious as there are times I struggle to walk from one sofa to the next. My brain refuses to admit defeat.

I also asked the local council about a wheelchair assessment, I had one back in 2008 but due (again) to the fact I was in complete denial about how awful things were I refused to go back. All my chariots have been bought on-line mainly from Amazon however they are no longer suitable and although Amazon sell the type of wheelchair I am after, I don’t have the means to buy it myself. Hence the Go Fund Me - Help me walk the dogs again campaign. I am happy to report that we have raised over £900 now. Most of that has been raised through hubby being sponsored to have his back waxed. I am a little worried though as earlier today I ripped a plaster off his arm (he’d had a blood test) and I thought he was going to cry.

**Since this post was written we have raised £1,300.

I have been truly amazed by people's generosity and I know we still have a long way to go but we have made magnificent headway in less than 30 days. The trick now will be to keep the momentum up and we have been discussing ways in which we can raise more money.

So despite the week being mainly one filled with quite severe pain and vomiting, there have been some truly wonderful moments in it as well.

This too shall pass

This too shall pass

I have been repeating this quote over and over in my head since February when my health first started to decline. Its the one thing that has kept me going through a year which I can honestly say is the toughest one I have faced.

In February I took a tilt table test, this was to look at my body's reaction when I ate or drank because I have postprandial hypotension. Before the test I had to consume 250 ml of lucozade which is just pure sugar and tastes like syrup. Once they had their base line measurements I was then tilted. According to my consultant it was the most impressive one yet. However for some reason the tilt table test triggered off my symptoms in a way no one could have expected or anticipated.

My previous tilt table test in 2011, the one that got me diagnosed with postural orthostatic tachycardia syndrome had left me bed bound for around 5 days. I had been expecting the same with the one in February. This time I was fine for a few days and the wallop! I ate my lunch and then felt my heart rate increase (which is totally normal for me) however after several hours my heart rate had not come down and I was feeling short of breath. Having been in this situation before and knowing that the local hospital would admit me but then do nothing I saw no point in panicking....just yet. I rang my gp the following day and went back on fludrocortisone.

My husband ended up taking a week off from work to look after me. To ease my symptoms I used my oxygen concentrator and ended up staying in bed for well over a week. Since then I have never got back to my pre tilt table level of health.

As those of you who read the blog regularly and follow me on facebook on my The Myasthenia Kid page will know this year I have battled cellulitis 4 times, I have been admitted to hospital because my bladder decided to stop working and I needed to be catheterised. My autonomic nervous system symptoms are still pretty awful. As I write this my head is swimming as due to the heat I am continually feeling faint and dizzy.

Putting all the dysautonomia symptoms aside (I have kind of got used to them horrific as they are) my major battle at the moment is my chronic back pain. Bad backs seem to be a family legacy. Obviously my mum is waiting for major spinal surgery (as written about in Democracy in Action part one and two), my father has also been diagnosed with back problems and needs to have steroid injections but is refusing them at the moment much to the rest of my familys (mum, sister and me) annoyance. My sister suffers with awful back pain and I have been slipping discs in my back from the age of 16.

The pain in my back and the referred pain is so bad that it is depriving me of sleep and making me feel sick. Its not massively high on the pain scale, I wouldn't rate it much above a 5 -6/10. However it is constant there is no relief.

On a good day I have a burning sensation down my left leg and an altered sensation, my leg feels wet and my foot can feel like I am wearing a wet sock. I also suffer with iliac crest pain - it took me years to work out what this pain was. I can push through this and enjoy whatever I happen to be up to. 

I have whats called leg dominant back pain, which means I have very little pain in my back, most of my pain is caused by the nerves that run from my back down my legs.

On a bad day (and unfortunately I am now having more of these than good days) the pain is down both legs, my knees throb. My buttocks and the backs of my legs ache and burn and I have a small amount of back pain. On a very bad day the back pain is awful and any sudden movement will trigger a wave of spasms. I have also noticed that my legs will feel heavy and I feel like it takes a real effort to move them. Keeping a diary of the pain I have also noticed there is a connection between the bad pain days and decreased function of my bladder and bowel.

Nothing has happened so far to make it a medical emergency such as double incontinence or not being able to go completely for hours. Other than that incident at the end of June when my bladder packed up completely and I ended up with acute urinary retention. 

To be honest I have been living with this nerve pain in my leg since 1999 when the original back injury occurred and I never really gave it much consideration until the lyrica (pregablin) I have been prescribed stopped working and my mum found out what a terrible state her back is in. 

My back symptoms ramped up at the end of March and I decided to do what I always do which is ignore them. However the pain has increased to such a point now where I can no longer do so. Due to it being nerve pain my opiate pain killers have zero effect on it. Doubling the lyrica dose at night worked for a month or so but I have now had to double that dose and double my morning dose. 

My back has got so bad that I am unable to do the things that I want to do. Combining the dysautonomia and the back issue I am no longer able to complete the small tasks around the house that I have always done. Things are starting to build up and get on top of me. 

On Friday I realised that I can't do this anymore and had to ask for help. So I now have a cleaning lady who will be coming for 2 hours a week to help me keep things straight. I can't keep on asking my husband to do more and more as its just not fair on him to be working full time looking after me and the dogs and then expecting him to do a massive clean as well. At least this way his days off will be spent spending time with me instead of impersonating Mrs Mop.

I find it hilarious that I am so house proud now, before I got sick I didn't do housework unless someone was coming to visit. I was working full time and we were always going out somewhere cleaning seemed like a real drag. Let me be clear my house was never like something off hoarders but it was dusty and things weren't always put away. Sheets and towels were always washed once a week its just what I call the finer detail was never attended to. 


One of my fondest memories is my mum coming to visit me in my flat and her saying "you don't iron your sheets then?" I replied "when I don't work full time it will be top of my list". I will be honest ironing my bedding has never made it onto my list of things to do even though I no longer work. To me ironing bedding is as pointless as ironing underwear, life is just too short (and obviously I am physically unable to be stood at an ironing board long enough to iron 2 sets of king size bedding!).

As I say my house could never have been described as something out of Hoarders (one of my favourite shows that I like to watch and feel smug. I do know these people have a mental illness before anyone decides to give me a piece of their mind!). It was dusty and well lived in. I had a friend once come over and write clean me on the dust on the TV screen. So I wasn't exactly on top of the cleaning back then. Plus hubby wasn't into it too much either having the old fashioned impression that housework was my job. Thank goodness that outdated attitude of his has now gone. I always find it amazing when I look back and see how much both of us have changed from before I got sick.


 My attitude to cleaning changed when I was at home 24/7 I wasn't prepared to sit in a mess all day everyday. Over the years I have become obsessively house proud which in turn has made hubby more so too. I am guessing some of the reason for my obsessive attitude towards keeping the house tidy was that I didn't think it was fair on hubby to be working all day and coming back to a mess. It was all about what I could contribute to our relationship now I wasn't working. Despite the fact that I would suffer enormously trying to keep on top of things I still felt that being at home all day meant I was responsible for everything in the home. It was never something that my husband demanded or expected it was an unrealistic expectation I placed upon myself. He didn't care if things weren't done as he would sort them out when he had the time. 

I always felt things had to be perfect. I am guessing that controlling my environment was a way of having some control in my life. I cant control my illness or how I will be feeling hour by hour, so by controlling how our home looked soothed me psychologically. Now I can no longer do this it troubles me and makes me feel guilty as I am yet again contributing less to our relationship. My mantra "this too shall pass" is continually on my mind.

Hubby actually told the cleaning lady she won't have much to do. I beg to differ, hubby still doesn't see the finer detail and I am fed up with the battle of getting him to hoover the stair carpet and the bedrooms. At least this way I know that they will be getting done and without argument!

It was a very bittersweet moment when I realised that I could no longer manage the little household chores that I had completed to ensure we kept on top of things. I am sure if we didn't have the three dogs there wouldn't be as much mess but as I could never part from them admitting I needed help was the only solution. It does compound the sense of failure I feel. I am unable to work and now I am unable to keep the house tidy. It makes me ask myself what can I do other than just survive at the moment. I will admit I shed a few tears over this decision.

Its going to be very strange for me having our cleaner in the house doing the jobs I used to do (and more). I am already getting anxious about it, what if the dogs scare her - they can be quite noisy on first meeting people, what if she thinks our house is really dirty, should I clean before she arrives? Its all down to a fear of being judged. She has already text me to reassure me that its ok to ask for help. It doesn't stop the anxiety though, if there is something to worry about I will find it.

So here I am the day before my cleaning lady starts trying to distract myself from the anxiety that I am feeling. I have to create a list of the jobs I want done tomorrow.....which I still haven't started because I feel guilty that I need help.

I know that "This too shall pass" however I am beginning to wonder when this year from hell will end. I have never been one to wish the year away but this year is one that I wish would just go. I want a do over and get back to how things were.

Weathering the storm - keeping a relationship strong

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

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


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

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

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

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

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

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

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

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

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

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

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

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

That's how we are weathering the storm together.