It has taken me a long time to get the courage together to put this into writing. Close friends and family know what I have been going through, but there is a huge stigma around talking about chronic illness, so I usually try and play it down and hide how I really feel. I now realise that this is the wrong way to go about it. This is a huge part of my life and hiding it is not going to help other people or to raise awareness.

I have never been a particularly "well" person and I never really understood why. Throughout all of the tests and procedures I have been through, all my results came back normal. Most people thought this was a good thing, but not having any answers was horrendous. Finally, my GP decided to test my blood for ant nuclear antibodies, which is an indicator for lupus. When the result came back positive,  my GP told me that I would have to repeat the test three more times with a three-month gap in between. If the results were all positive, then I could be referred to a Rheumatologist for further investigations. 

This went on throughout 2019 and during that time my marriage fell apart and my health became progressively worse. In February 2020 I was finally diagnosed with Systemic Lupus Erythematosus as well as Antiphospholipid Syndrome, shortly after I was diagnosed with Fibromyalgia too. I couldn't understand why my health was deteriorating so quickly and it scared me. My specialist told me that I have always had Lupus rumbling away but a traumatic event such as a marriage breakdown can trigger the disease to get worse. I already had Irritable Bowel Syndrome and Supraventricular Tachycardia.

· Systemic Lupus Erythematosus

In lupus the immune system produces far too many antibodies which, circulating through the bloodstream, cause reactions leading to inflammatory processes anywhere in the body. The two major symptoms are joint and muscle pain along with an extreme tiredness that won't go away no matter how much you rest. Rashes, depression, anaemia, feverishness, headaches, hair loss and mouth ulcers are all a part of it too. People with lupus can differ greatly in their symptoms and how the illness can affect them - life-threatening for a few, very mild for some.

· Fibromyalgia

Fibromyalgia is a long-term condition that causes pain and tenderness all over your body. Unlike arthritis, this isn’t because you have problems with your joints, bones or muscles. It’s thought to be caused by your nervous system in your brain and spine not being able to control or process pain signals from other parts of your body. Pain – you may feel as though you’ve got pain that spreads throughout your entire body, with certain parts – such as your neck and back – feeling particularly painful. Tiredness, fatigue and a general feeling that you have no energy. Poor sleep – waking up feeling unrested. Aching and stiffness, which often feels worse during or after you’ve been active.

· Antiphospholipid Syndrome

This occurs when your immune system mistakenly creates antibodies that make your blood much more likely to clot. This can cause dangerous blood clots in the legs, kidneys, lungs and brain. In pregnant women, it can result in miscarriage and stillbirth. 

· Supraventricular Tachycardia

Supraventricular tachycardia (SVT) is a heart condition featuring episodes of an abnormally fast heart rate. The heart will suddenly start racing, then stop racing or slow down abruptly. Episodes can last for seconds, minutes, hours or days. They may occur regularly, several times a day, or very infrequently.

Brain Fog

I was always easily tired, struggling to concentrate and remember things, I got my words confused easily and would say silly things. I often felt very embarrassed because I came across as being stupid, but I never knew that there was an underlying reason for it. Most of my friends and family can think of a time where I have said or done something ridiculous, and this became known as "pulling an Emma." My brain didn't always keep up with what I was trying to express and stupid things would come out my mouth or I would do something in a process that simply did not make any sense.

I now know that this is one of the symptoms of Lupus, it can affect the brain and causes memory loss and general brain fog. It was such a relief to be able to finally explain why I couldn't always express myself properly or think clearly. I often struggle to follow conversations so I can be known to avoid talking to people who don't understand my condition or know me well enough.

Fatigue

Extreme fatigue is another symptom of the disease. I try not to feel guilty for needing a lie in or an afternoon nap, I'm not simply "lazy" as people first thought, I generally have to rest more than the average person as my body simply requires more time to recover. I would say that fatigue is one of the worst parts of being ill. There is nothing that can be done to help it. For pain there are pain killers, for fatigue there is nothing!!! I am having to learn a new way to live my day-to-day life, I must plan everything ahead of time and pace myself during the day by taking regular breaks to sit down and rest. It's so important not to overdo things but when I finally have a good day, I want to get things done so I don't always get it right. 

Flare Ups

For me, Lupus flare ups happen every six weeks. It will last from one to two weeks before I slowly start to feel better. Within that six-week period I also have Fibromyalgia flare ups that can last a couple of days at a time. Overall, I get one to two good weeks per six and I can't tell you how frustrating that is. When I am having a flare up, I force myself out of bed for the school runs and feed the children as this is all I can manage. I get so exhausted; I feel as though if I don't lie down, I will just collapse. If I try and power through, I get dizzy, nauseous and every part of my body feels heavy as if it is made of lead.

Pain

I am in pain every minute of every single day, no matter what. Some days it's light pain and I can keep it under control and still feel relatively normal. Some days it's unbearable pain that is literally in every part of my body. Every joint, every muscle and even just the touch of clothing on my skin hurts. My knees, hips and lower back are the worst areas, which means that some days I really struggle to walk. I know that I could help myself by using crutches, but I absolutely hate them because I feel embarrassed using them. 

I have things in place around the house and I have had to learn new ways of doing things so that I can still be independent. For example, I know that I can't lift a heavy pan when my wrists are bad, so I have to plan ahead to make sure that what I'm making for dinner is manageable for me. I can't always stand for very long in the kitchen, so I have a special chair to perch on when I need the extra bit of help. I will always try to hide these sorts of things around other people because I don't like admitting that I sometimes need them.

Anxiety and Depression

As you can imagine, my mental health isn't the greatest. I do suffer from both anxiety and depression, which I'm sure you can understand given the daily battle that I face. I am mostly in control of my emotions, but there are days where I just want to give up because it feels as though it will never get easier. The support of my partner, children and my Mum is what gets me through the really hard days. I am so lucky to have a good network of support from them as well as some very good friends and I honestly don't know where I would be without them. It can't be easy for them to see what I am going through and not being able to help. I wish there was a way that I could take away the worry that they feel.

Stress

Stress has a huge part to play in chronic illness, it is a major trigger for a flare up. It is so important to learn to minimise the stress in our lives and learn when to say no. I have not quite managed this yet, but I am getting there slowly. As I mentioned before, I am learning to pace myself and to give myself time to rest properly. I have learned to let things go when I am upset because it's me who will ultimately suffer in the long run and generally that is not worth the consequences.

Hair Loss and Skin Problems

As a woman, my hair is a big part of my image and I have really struggled with the damage that lupus and my medication has done to my hair. I have had extreme thinning around my hair line and the condition of my hair is dreadful no matter how hard I try to look after it. I have found it very distressing that lupus has taken so much out of me on the inside, but it also affects how I look on the outside. My face often breaks out in a sore rash and my skin is extremely dry and itchy and I am not supposed to wear makeup. As a woman, I want to feel I can keep my appearance up, but lupus is taking that away too.

The Future...

I would love to be able to make plans without having to consider the consequences of a big day or night out. I would also love to be able to go back to work full time and have a rewarding career as I have a lot to give. Unfortunately, at the moment, that is not possible. I have had a very difficult couple of years and things are really starting to look brighter for me now. I hope that within the next year my health will start to improve as my stress levels reduce, and I will begin to feel like myself again. 

I know that there are a lot of people who are living with the same difficulties who don't always want to open up and share their stories. If I can help one person realise that they aren't alone with their struggles, then I will have done something good. Some people think that talking about these issues is "attention seeking" however, I am simply trying to raise awareness because you never know what other people are going through. 

Lupus UK is a wonderful organisation that helps people suffering from this awful disease. I have personally found them to be an excellent source of information to help me get to grips with the disease. I am hoping to raise money for them and raise awareness for people like myself.

Every donation will be greatly received!

Love from

Emma 

xxx