One weekday morning in September 2012, my newlywed wife Jess woke with what we thought was a terrible bug. As I’m getting dressed for work she takes a moment to sit on the sofa and recoup, unfortunately her legs stopped working and she couldn’t get back up. Her mum came over to take her to the doctors and I went off to my job as an Administrator. I got a phone call at work mid morning telling me Jess was being admitted to hospital and I left work to go see her. Now, I’m not great in hospitals as it is. My dad died of renal failure when I was 12 years old, so they have a pretty bad connotation for me (as i’m sure they do for everyone, let’s face it, hospitals aren’t a nice place to be!). I also have a habit of fainting whenever I’m inside one!
However, in times like these, you have to pull yourself together, stiffen up that upper lip, take a deep breath and put your battle face on! So, thats exactly what I tried to do. I walked into her ward and immediately caught her eye. She smiled when she saw me. That helped.
She had full on leg and arm tremors that lasted constantly for 2 weeks. She couldn’t feed herself, had to wear protective gloves to stop her hurting herself and lost so much weight because the tremors made her physically sick. She stayed in hospital for nearly a month. During this time, I practically had a mental breakdown. Jess had bought me a puppy a week before she fell ill and I was trying to juggle a new full time office job, a new puppy, and going to and from the hospital everyday after work. I didn’t have time to eat, so was living of slices of toast on the go and warmed up meals my kind neighbours and friends from church were leaving out for me. I was also suffering from daily panic attacks. My family lives 5 hours away, so they weren’t around to help. I used to get home from the hospital visits at night so exhausted and emotional from trying to keep my worry for Jess and anxiety together and I’d just lock the door, sit on the kitchen floor in the dark cuddling my puppy and cry uncontrollably. Until, the next morning when the routine started all over again.
Things got worse for us when I couldn’t cope anymore with breaking down on the way to work! All I wanted to do was go to the hospital everyday and be there for Jess, not be sat at my desk being spoken to like dirt from 2 horrible bosses. One morning my line manager took me into a side office and instead of asking me how I was, and being supportive – I was laid into big time about how I was ‘there but not there’, and I needed to pull my socks up basically. I asked if they felt my work had slipped as a result of my personal circumstances, which they replied ‘no’. Therefore I didn’t understand why I was being ‘told off’. Well, as you can imagine I broke down and had a panic attack. I tried explaining what was happening, I didn’t feel like I was being believed about how bad Jess’s condition was and so I spoke back. I told my boss she was out of order and had no compassion, I packed my things up and I left.
I know I’m digressing a bit here, but I feel it’s important to paint the whole picture of my exact state of mind during this time, because I know that a lot of you will have felt the same…will be feeling similar emotions. It’s hard enough to cope with someone you love being poorly, but I think, even harder when you don’t know exactly what is wrong with them, how or when they will get better, and when you’ve got no support from your workplace.
We experienced so much negativity from doctors, social services, occupational health professionals, work colleagues and others, that just simply did not understand what was wrong with Jess and were therefore so quick to jump on the ‘Psychological bandwagon’. We had to fight to get the neurologist to carry out scans and tests to check for brain tumors etc. We were told that her ‘problem’ was ‘functional’ and nothing more – no explanation, no treatment or care plan. We were fully accepting that her symptoms were functional, but felt they were not listening to us when we tried to tell them that the cause of this, in her case, was not a psychological one.
When Jess came out of hospital, I became her carer full time. I got so sick and tired of health professionals coming into our home making ‘assessments’ on how she/we could cope with her limited mobility etc. Everyone that came in was under the impression that Jess was suffering some kind of Psychological problem and therefore she would be back on her feet within a matter of a few months. For this reason, she was not entitled to a voucher from the NHS towards the cost of a wheelchair and we had to fight with our social worker for enough hours of care to be put in place to help me. I cannot begin to tell you how hard it was, mentally, to have strangers come into our home on a daily basis and tell me – the person that has been there from the beginning, the person that is there when no-one else is around and see’s first hand how much pain and discomfort my loved one is in, the one who is there when she has a ‘fit’, ‘spasm’, ‘tremor’ or full blown ‘non-epileptic’ attack, the one that has to call an ambulance when things get bad – that there’s nothing they can do to help because she doesn’t ‘fit the criteria’. All because Jess didn’t have an ‘official’ diagnosis – because nobody understood what ‘FND’ meant or the debilitating effect it has on it’s sufferers.
One day, two nurses came from ‘Occupational Health’ to asses Jess on her mobility around our 2 storey terraced house. They made her get off her bed, on and off a bath board, ‘walk’ across the landing, and down the stairs (I normally would help her, and she would do the stairs on her bum) – they didn’t allow this, even though I warned them it could bring on a seizure, and instead made her hold onto the banister and ‘walk’ downstairs, at which point, at the bottom, she had a full blown seizure in front of them. They helped me get her protective gloves on her, sat and observed her for a while whilst she was fitting and then left. They had not finished their assessment, but told us they would. The next time I called to find out what was going on – I was informed Jess had been discharged from their services!. I was gobsmacked.
Luckily, 1 year on – we are starting to be listened to. Jess had a full psychiatric assessment, which indicates no proof of a psychological element to her disorder. She did not even have mild depression. Her GP is very supportive and she has been referred to a M.E clinic with a confirmed diagnosis of FND and M.E. We are hoping the M.E clinic will help with learning how Jess can pace herself and therefore not get so tired out. We had our hearts touched with the kindness of strangers, who helped us raise enough money to buy Jess an electric wheelchair, which helped her regain much needed freedom, and our long hard battle with social services finally resulted in enough care hours being provided to support me look after her.
As a new carer, you may feel overwhelmed with all kinds of different thoughts and emotions. I went through so many, from loneliness, stress, selfish thoughts and questioning my future and our future as a couple (it’s a hard battle you have with yourself; if I stay, I will miss out on so much – spending time with friends, traveling, wanting to have a career or a baby etc). You feel like you’re giving up your whole life for someone else, literally. You can’t go to social events you want to, don’t ever have time for yourself. You may even lose friends, – its inevitable that people get sick of hearing about someone that is sick, it’s like out of sight out of mind – you see your friends and family all going about their ‘normal’ lives and you feel sad and resentful that you can’t have what they have, that you can’t do the things they do so easily.
Even the little things, like walking down the street holding hands with your poorly spouse for example, that simple thing I used to take for granted is now accompanied by a wheelchair, and only on a good day. You want to go inside a shop but upon approach, you realise it doesn’t have wheelchair access, you don’t want to leave the one you care for out, so you miss out and carry on walking by. Or you feel resentful and exhausted from doing everything – all the necessary day to day things, the looking after pets, the shopping, managing finances, cooking, cleaning, laundry, everything. So many things, so many emotions. You may look for ways to cope. I turned to drinking heavily, I was also prescribed anti-depressants and valium for when I had a panic attack. It’s taken me a long while to realise none of these things are helpful, and they certainly don’t help me be a good carer, they were just numbing me to the situation, and as a result, detaching me from it. As a result, our relationship suffered. I’m happy to say I gave my head a shake and snapped out of it. I’m telling you all this because I know I can’t be the only one that has had these struggles, and I know it’s nice to know you are not alone. Also, I don’t want anyone to ever feel bad about any of the thoughts and emotions they have gone through with this process of becoming a carer. It’s only natural and you will become a better person having gone through this. When you feel down, or isolated, remember you are not alone. Most importantly the person you care for would never wish this role upon you and I can bet they tell you they are sorry every day. We don’t want them to be sorry, we just want to give them a normal life. I know each and everyone of them appreciate everything you do more than you will ever know.