Sue's story

When I was diagnosed with lupus I was a little shocked, but also relieved that I finally had a diagnosis. I had been ill with so many chest infections and niggly ailments that took forever for me to recover from over the past few years and suddenly everything fell into place. I had a reason for feeling so tired and wasn’t going insane!

My diagnosis came after I’d had an operation on my right leg. It wouldn’t heal and I was in a lot of pain around my ankle, which I hadn't experienced before. I found it difficult to walk and the pain was excruciating. I was sent to various consultants to see what the problem was. I saw an orthopaedic consultant, the fracture clinic, and various others before I finally came to see a rheumatologist. As soon as I walked into his consulting room, he said to me ‘I know what you have: it’s lupus.’ It was apparently obvious to him by the red markings on my face.

This then led to further tests and investigations. I had already been diagnosed with Raynaud’s many years ago when I was 13, and this led to the thought process of scleroderma, which was confirmed along with Sjogren’s syndrome. My rheumatoid arthritis had also been diagnosed many years ago, although I’ve never had any follow-up.

I found that once a diagnosis had been made, everything became so much easier to understand and I was seen by various consultants who all added their piece to the jigsaw that had now become my life. I visited so many different hospitals for different tests. In 2015, I was diagnosed with systemic sclerosis-associated pulmonary arterial hypertension (SSc-PAH).  I was getting shortness of breath, and I was at the clinic and they referred me to the PH team. The consultant ordered right heart catheterisation, and then it was diagnosed. It is under control now but it slows me down. Walking is a bit of an issue as I get out of breath quickly, but it is not as bad as for many people.

I was initially put onto steroids and hydroxychloroquine, then other medications followed as things slowly began to be uncovered. I also underwent lung function tests involving treadmills etc. My rheumatologist eventually referred me to the Royal Free Hospital in London. I am still under the care of the team there, but I also have shared care with a rheumatologist at my local hospital where I now live.

I’m on several different medications right now, including methotrexate and hydroxychloroquine, tadalafil for the pulmonary arterial hypertension, colesevelam for my stomach, a form of vitamin D called cholecalciferol, prazosin, folic acid, apixaban, painkillers and eyedrops. I also get protein drinks because I lose weight every so often due to problems with eating.

It’s a lot to remember to take – I used to be someone who wouldn't even take a headache tablet! Thankfully, I haven’t had too many issues with side effects. My main concern was the weight gain from the steroids that I was given initially, but once everything was under control and I had stabilised, the steroids were slowly reduced and stopped.

I have had to make a number of lifestyle adjustments, but one of the biggest impacts was that I had to retire from my job in the NHS. I found this quite difficult – I was only 49 and hadn’t considered giving up work, but my health and working environment meant I just couldn’t carry on. At first, my boss was brilliant. She was the deputy director of nursing at the Trust I worked for, but she eventually got moved and my base changed to another hospital, which was much further away.

I also found the commute difficult. Then my office got moved from the ground floor to another, higher floor. Having to walk up and down the stairs was hard work and there were other things I just couldn’t do. In the end, I had to take some time off and that’s when I was offered redundancy, which I took.

Considering that I worked in the NHS, the response to my condition by my employer was very poor. Not even the human resources team took the time to understand what was happening to my health and what I was going through.

Unfortunately, because of my lungs, I can’t do much before I’m tired and in pain – only about 10 minutes worth. Cooking, dressing, gardening and general housework are all difficult, but I try to do what I can slowly. With the BSM I can become housebound for quite a while, and this can be difficult.

But by far the biggest change we had to make was to move from our house in Hertfordshire to a bungalow in Lincolnshire! I was struggling with the stairs and the hilly area we lived in at that time. I realised that I could no longer do what I was used to, like walking, shopping and, sadly, working. Life became limited in a lot of ways; large obstacles and even small, seemingly unimportant chores became a challenge. However, I manage as best as I can. Help is always around me and my husband cares for me, so we have ‘adapted’ together.

Apart from the big move, I have come to accept that I cannot do the things I used to, and if I do anything above my capabilities now, then I know I will pay for it for the next 24 hours at least, with the pain and breathlessness that will result. Still, I am aware then that I need to rest, sleep and recharge my batteries.

Most days I stay as positive as I can, but there are sad and frustrating days too. Each condition brings its own problems to deal with and this makes everyday chores difficult, painful and frustrating! But you’ve got to be positive. I’ve got a good husband and family and I’m grateful for a lot of things.

In that way, I don't feel that a lot has changed. We have always been a close and supportive family, and this remains in place. It’s just me and my husband at home now as our boys have grown up and left the nest, but they are concerned obviously, When they visit, they all do their bit in the house and help my husband where they can. I guess I can't do as much for them as I would like but there is a great understanding from all my family and friends. However, on my part, I do feel guilty and that I am a burden though they all tell me constantly that this is NOT the case!

Friends and family help simply by being there to support me and to listen to me. When I am having a bad day and in a lot of pain or my breathing is causing me grief, I know they understand that I need to rest and let my body take the time it needs to heal itself ready for the next round.

The advice that I would give to someone living with a chronic illness would be to stay positive! I always say that if you’re not positive you may as well be pushing up the daisies because it can really drag you down if you let it.

There are hard days, there are frustrating days, but every day to me is a bonus, so try to keep a smile inside and remember you are worth everything and life is very precious. If you can find alternatives ways of doing things then do not be afraid to try different routes or methods. New opportunities can also arise so be ready for a challenge. Getting angry with yourself and the world will not change anything, although this feeling still needs to be voiced and accepted. Live life as best as you can. Accept and adapt to your new limits.

I do feel that living with a chronic condition has definitely changed my perspective on life. Suddenly, the things you did and took for granted become difficult to do and restrictions are placed in your way, but life is short and I do what I can do. I try not to live on the ‘what ifs.’ I enjoyed my work and still miss it to this day, but you have to deal with today and the future, not the past. I still have my family and feel ready for what challenges and changes my conditions may bring to me in the future. I try to remember I am still me, just a little ragged around the edges!