Nicola's story

The text below was written by Nicola in 1999 to accompany Millie Brierley's exhibition 'Care at the Leading Edge'. Her account provides an important reminder that a patient can continue to experience difficulties even after a drug has helped them and the need for support of relatives who care for them. Nicola's story is highly personal and therefore not necessarily reflective of the experiences of other patients who took Campath.

After a long stay in hospital, where you’ve been surrounded by people, be they staff, patients, or visitors, returning home can prove difficult. One minute you’re cocooned in a safe, secure, friendly environment, and the next you’re on your way back to 'normality', whatever that is! This can prove to be quite a traumatic transition, particularly when you suffer from a chronic illness where you’re likely to be persistently admitted and discharged from hospital for possibly the rest of your life, with the probability that the most you can hope for is a remission. It’s a far cry from being admitted to hospital and treated for an acute disorder, such as appendicitis, and going home cured.

I have a rare form of systemic vasculitis and T- cell polyarthritis, osteoporosis, and RaynauId’s Disease, and over the past fourteen years I have spent much of my time in hospital with admissions that have often stretched over months at a time. So, when one day during a ward round you are told that you can go home, it’s not uncommon to feel at least a little apprehensive, if not positively petrified! Everyone expects you to be over the moon at the news, but particularly if you are discharged before you expected, or if you still feel unwell, it can be a very daunting prospect. It is possible that you can literally be seen and discharged by your doctor, written up for your prescribed drugs, and out of your bed within the hour, even if you have to wait for your take home medication and your transport in the day-room. Often, you may have had questions that you wanted to ask before you left, but either didn’t get the opportunity, were too nervous to ask, or didn’t remember at the time.

There have been many occasions when I have felt too awkward, embarrassed, intimidated, or even silly to ask questions, or share my fears and feelings, all at the cost of going home worried, unhappy, and even frightened. I have often felt that my problems are unimportant compared to those of fellow patients, which is another reason for my not coming up front and telling my doctors how I really feel. However, I have discovered that I am not alone in this. I have found that most patients wouldn’t dream of discussing their innermost feelings with their consultants, finding it uncomfortable enough just sharing the bare essentials. I am also guilty of placing my consultants on pedestals, deeming them far too important to be burdened with my real anxieties, feelings, and fears. I look upon them as intelligent, important, busy people in constant demand, who are far and beyond anything I could ever hope to be. I tend to forget that they are not gods, but human beings, and should therefore be approachable no matter what. This is one of the reasons for my preferring to see a familiar face during consultations and ward rounds. I need someone with whom I can rely upon to provide me with a morale boost, offer encouragement, and who will give you any support or advice that you may need.

It might even be an idea to perhaps have some kind of helpline for chronically ill patients to give them a kind of lifeline. To know that, if you’re at home and you feel unwell, or have serious worries but nobody to share them with, there is somebody - at the end of a line who will listen and advise you, can be of great comfort. It is also important for someone to mediate between not only patient and consultant and vice versa, but between consultant/patient/family, and to even mediate with the patients’ GP, community nurses, and any outside agency nurses who look after the patient on a regular basis. It’s important to put everyone involved in the picture, providing information and support for all concerned. It may even be that you don’t use the helpline, but feel comforted to know that it’s there should you feel the need. I know how I felt once I’d been discharged from the ward that I’d been on, having been in for weeks on end.

The journey home on its own was a nerve-racking, tiring experience. I was quiet, finding conversation difficult, and felt too sick to speak. I was absolutely petrified in case something went wrong. During the journey I found that everything looked different to the way I remembered it, and somehow my senses were heightened. Once home, the walk from the car to the bungalow felt like a nine mile hike, even though the distance is minimal. Entering the bungalow was a peculiar experience as I was seeing things as if for the first time. Although everything was as I’d left it, nothing seemed the same.

I was still feeling unwell, I felt weak and exhausted mentally as well as physically, and I was in a lot of pain. I felt fragile, insecure, and extremely emotional, and wanted nothing more than to curl up into a ball somewhere alone where I could just pull the duvet over my head and sleep all day and all night. I felt a deep nausea in the pit of my stomach that just wouldn’t go away no matter how many anti-emetics I took, and despite being surrounded by my family, I felt alone. Our house didn’t feel like home, and yet I couldn’t face going out.

I worried that there was no-one qualified on hand if anything went wrong, and my anxiety levels went through the roof! I missed the staff, many of whom had become friends, I missed the patients, I even missed the ward routine. I had great difficulty in adjusting to my home environment. I felt that one minute I had been lying in a hospital bed, surrounded by staff and equipment, receiving treatment and being monitored, and the next, I was at home with not a medically qualified person in sight to help me should anything go wrong. However, the saving grace of it all was something basically very simple yet effective. Because I had gone home to give my parents and I a break, and to see how I fared at home, the ward had told me that, if I felt unwell, had any worries, or even just felt that I needed to talk, to pick the phone up any time day or night and there would be somebody there for me. A familiar voice at the end of a telephone line can prove to be a huge comfort.

Although you don’t always realise it at the time, what you’re experiencing are the same difficulties and worries as a lot of other people out there, and just knowing that there is somebody there at the end of the line who understands what you may be going through provides you with a much needed comfort and confidence. The other nice thing about the ward’s offer of a friendly ear was that it was extended to my parents. They should be entitled to as much help, support and advice as they feel that they need. The needs of carers and loved ones are often overlooked or ignored, and so I think it’s about time that they are rewarded with the recognition that they deserve. After all, it’s as important to look after the carers as it is the patients. Therefore, I believe that regarding the treatment, it shouldn’t only involve the patient and the consultant, but the patient’s family, and even the family GP, community nurse, outside agency nurses, and anyone directly involved with the patient. It’s important to make sure that everyone concerned is put in the picture, and to provide any information and support that is needed.

I believe that this is especially important now that there have been such vast changes in the community. Gone are the days when you could pick up the phone day or night to call upon your GP, or someone from your practice who knew everything there was to know about you and your family. You always knew that, even if they didn’t necessarily need to pay you a visit, they were on hand to advise you, and wouldn’t hesitate to call in if you were in trouble. My family and our GP all had a good understanding of each other. He knew that we would only call if it was absolutely necessary, and because of this, his actions were prompt. He also offered invaluable support to my family, especially at times of particular stress and worry. After all, when you are a close family who share the same home, illness can have a terrible effect on all concerned. Unfortunately for us, but not necessarily the GPs, the system changed; our health centre joined a co-operative, our village grew into a town, and now I see my GP once in a blue moon. Now when I come home from hospital my parents and I find that we’re on our own. If we’re feeling desperate and call the surgery, we are usually told to go back to the hospital, which, once you have been discharged, is extremely impractical advice.

Despite all of this, my family have coped admirably. Mum, has been, and still is, fantastic. She really is my rock. Due to my problems in the community, my doctors at the hospital have provided me with most of the drugs that I would require when in dire straits in order that Mum can administer them as soon as possible. That way we manage to avoid complications with on-call doctors on the medical answering service.

My sister has also bravely learned how to administer my drugs so that occasionally I can spend time with her and her husband without Mum having to be there, which gives me a change of scenery, and more importantly, gives Mum some richly deserved time alone with Dad. This has worked so well that I have managed to avoid being admitted to hospital on each occasion that, due to severe pain, I would otherwise have been taken in.

I really admire my Mum because she has looked in the face of adversity and smiled. She has become my friend, my nurse, my cook, my house-maid, my everything. What I most admire is the fact that she doesn’t complain when I call her to help me with whatever I can’t manage, and even though she never wanted to become a nurse, or anything that even resembles a nurse, she does whatever is asked of her whenever it is asked of her. She has even overcome her fear of needles so that she can give me pain-killing injections when I’m in severe pain. Even if I have her up all night with one thing or another, she never makes me feel guilty. I could call her constantly all day long, and although others will make comments and make me feel worse than I already do, she wouldn’t say a thing. Mum says that she is 'the legs that I haven’t got', and feels that I shouldn’t be made to feel bad just because my independence has been taken from me. Her selfless attitude never ceases to amaze me, and only senses to increase my admiration for her. I could never ever thank her enough for it. In fact, I’m lucky to have such wonderful, supportive parents who give me everything that I could possibly want or need, whether it be emotional or material.

I can’t pretend that life hasn’t been hard, even traumatic at times, but I strongly feel that it is as hard, if not harder, for those around you who love and care for you so very much, to stand by, watching you go through each ordeal or crisis whilst feeling completely helpless, never knowing what they might find when they see you next. Hating, myself, to see anyone that I love ill, I can at least get an inkling as to what they must go through. This in turn gives me a strength to push myself on, to make as much of an effort as my energy affords. In order that I can show them that I’m still in there, still fighting, still as stubborn and obstinate as ever! Although there are times when you feel that you are teetering on a tightrope without a safety net. It’s important to remember that there is always someone somewhere waiting in the wings to catch you. You just have to try to be strong enough and positive enough to realise this, and to recognise your limitations so that you know when it’s time to call for the safety net. Those around you who are close to you also have to recognise these factors. After all, they have a breaking point too. Loved ones and carers deserve as much support as the person who’s unwell. It’s a stressful job, being a carer!

I also believe that it is as important for the patient as well as the family and friends, to carry on as 'normally' as is possible under the given circumstances; as I find that this usually gives all concerned hope and strength, and gives way for less worry. After all, you’re still basically the same person on the inside that you always were. Sometimes people tend to forget that you are still the same person that you were when they first met you. You may have gone through changes, but at the end of the day, who hasn’t? If anything, I believe that I am a much stronger person than I was, and I hope a better person for it. I appreciate things in life that I hadn’t even noticed before I became ill, and I’m more aware of the needs of others. I’m more open and positive than I’ve ever been, but I’m still human. I still have days where I can’t see the woods for the trees, and I still need a good push some days to bother to get up instead of pulling the duvet over my head! Sometimes I think that if Mum wasn’t there to give me that push, I’d never see the light of day!

From a positive point of view I have to say that all in all I am an extremely fortunate person. Despite my illness and disabilities I have a quality of life that, without the hard work of my doctors and their colleagues, plus the love and support of my close family, I wouldn’t otherwise have had. I feel extremely privileged to have met and come into contact with each and every one of my consultants and those that they work so closely with. Throughout all of the stays that I have had in hospital, I have met some truly wonderful, brave, inspirational people. All in all, through being ill, I have experienced so much that I could never have dreamed of experiencing in a lifetime. One thing that I could never say is that my life is dull!

Coming home ordinarily after a long stay in hospital can be a strange experience. Therefore it’s going to feel even stranger when I come out of hospital after the next long stay because I am due to have a specially adapted en-suite built onto my bedroom, which is also going to be adapted to give me more independence. Over the years as I have become more and more physically disabled, my parents have not only cared for and supported me, but have made many alterations to the bungalow in order that I can manage as well as possible physically, as well as to help me to feel that it is my home as well as theirs. Unfortunately, everything up until now has had to be embarked upon and paid for by my parents, even though it’s all been for my benefit not theirs.

Somehow in the beginning when I had to leave school because I had become ill, I slipped through the net. This meant that for years I went without education. In fact, I went 'undetected' completely with regard to everything. We didn’t realise that we were entitled to benefits, to a social worker, or to any help whatsoever. Therefore anything that I needed was down to my parents. My Dad has paid out thousands in adapting the bungalow inside and out so that I could cope, he has paid for clothing and shoes, a car that I could manage, you name it, he has found the money for it, as none of us had been told that I could claim benefits so that I could have money in my own right. To add to the difficulties, my Mum gave up her job to take care of me and be there for me whilst I was in hospital, and at home, thus there was only one income coming into the house. Basically I really don’t know how I’d have coped, or would cope if it wasn’t for them. They have given up so much for me that I could never thank them enough.

My sister has also gone without a lot because of my circumstances. She spent a lot of time with our late grandmother whilst Mum and Dad were at the hospital, and, especially because of her age and the fact that she was still at school, she found it hard to cope with the loss of time and attention. Therefore every spare moment they had, they gave her as much as they could possibly give. Now that we’re older, and I’ve managed to spend less time at the hospital over the past year, we get to see more of each other, even though the situation has changed again in that she is now married! I’ve gained a wonderful brother-in-law, and my sister and he are very good to me. They are also gems when it comes to looking out for me and taking me out and about.

Between my parents, my sister and brother-in-law, and close friends, I am extremely fortunate to be able to say that despite everything, I still go on holiday here and abroad, I go to the theatre, the cinema, to restaurants, concerts, in fact I go anywhere and do anything that is wheelchair accessible! A lot of people that I meet at the hospital are shocked and surprised that I go on holiday and have a social life, but as I tell them, just because a person is unwell or has a disability, there is no need for their life to come to a halt.

Many patients aren’t aware of what’s out there, and it’s about time that someone told them that there is life after hospital! Just because you have an illness, it shouldn’t mean that your life should stop. I believe that it is important to try to retain every ounce of normality that you can, and to maintain your self-esteem, which is why I try not to let myself go. I don’t want to look in the mirror to see someone pale and poorly looking back at me. I want to see the person that I perceive myself as in the reflection. When you know someone well, you know their character, their mannerisms, everything. That’s why, when I’m able, even if I feel unwell, I try to make myself up and at least make sure that I look presentable. That way, those close to me know that I’ve still got a handle on things, and I feel better than I would if I hadn’t bothered. I actually think that if you can’t do anything else, you should at least make an effort with your appearance and hygiene. The better you look, the better you feel. It doesn’t matter if you’re male or female, everyone likes to feel good. It’s vital to retain your self-worth and self-esteem. If you give up on yourself you’ve lost the battle. Doctors, nurses and drugs can only do so much, and the rest is up to you. If there are things that you can no longer cope with, then you should try to be brave enough and strong enough to swallow your pride and ask for help.

Everyone, healthy or otherwise, has to ask somebody for help at some time during their life, and being ill and/or disabled makes you no different from that respect. I have discovered that if you don’t know how to go about something, there’s someone somewhere that does, and you should never be too proud or embarrassed to ask. Sitting on your laurels is a waste of time and energy! There’s a big wide world out there waiting to be explored, and I want to see and experience as much of it as I can. Illness and trauma alters your outlook on and perception of life. You need to adapt to your situation, as do those around you. You also have to learn to speak up for yourself and look out for yourself. Let others in, otherwise they’ll never understand or have patience with you. The more information you feed them, the more they’ll give you in return. If you clam up, it's bad for you, and frustrating for others around you. Stop looking at the negative side of situations, and focus on the positive. Stop looking back and look at the here and now. Address your fears, and do something about filling that void in your life!

To be quite honest, I feel that my becoming ill has changed me completely, and not necessarily in a negative way. I feel stronger, more positive than I ever have, and I’m determined to try to pack every moment of my life with experiences. Each and every one of the experiences that you have is valuable. Even if it is a bad experience, you learn from it and become stronger. When I became ill, it wasn’t just me that it affected. The lives of my whole family were changed. We had to decide in the very beginning how we were going to handle things. Were we going to dread each day that dawned, and think illness, talk illness, breathe illness? No.

We were going to take things one day at a time, one minute at a time. And we still do. I’m treated like any other member of the family. We all laugh together, talk together, disagree together, and we all love, respect and support each other. All in all I wouldn’t have it any other way. Now that I’m not so well again, I’ll try to spend more time in the garden with my Mum. The garden has always been her sanctuary, and it’s now becoming mine. My latest project is to raise the pond so that I can look after it and watch all of the changes that take place within it from my wheelchair. It’ll be a peaceful, tranquil and inspiring place to sit and write poetry, which I find very therapeutic. I have also promised to write out a friends’ wedding invitations and place-setting cards as I enjoy calligraphy. It’s nice to finally be able to say that I’m too busy to be ill! It most definitely helps to have goals. I can’t wait to discover what’s waiting around the corner for me next!