Today is World Urticaria Day 2015 and in support of all of those suffering with this awful disease, including myself, I wanted to try and explain what it is like to live with Chronic Urticaria (CU). Because that’s what we do. We live with it. It affects every hour of our day. Every day of our week. Whether we’re awake or asleep, the CU is there and although you can’t always see it, you will almost definitely be able to feel it. And in those very rare times you can’t see or feel it, you are waiting on its return, anxious and aware that at any moment it could take over your entire body. Even during the rare times your body is not affected, your mind certainly is. Chronic Urticaria is a disease that takes over your body and your mind. It takes over your life and can change the person you are/were entirely.
I have suffered with CU for ten very long months now. In that 10 months I have been on one hell of an emotional rollercoaster. I have experienced discomfort beyond words, cried myself to sleep night after night and been filled with fear at what is happening to my body. I have seen 8 different doctors in 3 different hospitals. All of whom can’t give me the answers I need. I have taken up to 16 tablets a day, none of which have gained control of my symptoms. I have struggled to maintain my career, to keep my relationship with my husband what it should be and struggled to be the mother and friend I want to be. For the first few months I suffered with the disease I wouldn’t leave my house and couldn’t sleep at night without physically holding on to my husband for fear something may happen to me in my sleep. Chronic Urticaria is a hideous disease to live with and it has affected all areas of my life – my relationships, friendships, social life, work-life… It can affect anyone at any time and it changes lives dramatically. Yet there is so little understanding of the condition and the effect it can have on the patient’s life. Here is a little insight….
Urticaria is the scientific name for hives. Hives appear on the skin suddenly as red, swollen and itchy welts. Urticara itself is very common. The most common type lasts 24 hours and for most people it will settle within a day or two. In some cases it may take a few weeks. When Urticaria lasts more than 6 weeks it is diagnosed as Chronic Urticaria.
I have suffered with Chronic Urticaria for 10 months now. Others I have spoken to have suffered for 10 years, others their whole lives.
Every patient suffering with Chronic Urticaria suffers differently. I can only speak for myself. My Urticaria is visible daily. On a good day I have a few hundred welts (small, raised areas.) On a bad day I have thousands. They cover my scalp and every inch of my body down to the soles of my feet. They look like mild blisters and are red in colour. The welts last between 2-10 hours. Each day my skin will flare, then return to normal, only to flare again the following day. In 10 months I have had no day without welts appearing and affecting my body and my life.
For those suffering with Chronic Urticaria a related condition called Angioedema may occur. I am one of the unfortunate ones that suffer from this alongside the welts. In this condition fluid leaks in to deeper tissues under the skin causing the tissues to swell. This swelling can occur anywhere but for me it occurs on my eyelids, lips, throat and face.
A quick google search will tell you that Chronic Urticaria is
“..a condition where an itchy rash persists on and off for six weeks or more. The cause of the rash is often not clear. Some people also develop swelling of the lips, tongue or other areas of the body from time to time. The symptoms can often be eased with antihistamine tablets.”
But ‘itchy’ doesn’t really do this condition justice. I can tell you that, at times I wish I could literally rip my skin off. The itching is so incredibly intense that I will scratch myself until I bleed. And I only stop then because there is no skin left to scratch. The itching can cover your entire body. I cannot tell you what it feels like to itch from your scalp to the soles of your feet. No amount of scratching or rubbing will ease it. You cannot concentrate on anything because the itch is over-whelming. It is very hard to enjoy life when your whole body is silently itching away and there is nothing you can do about it. Because unlike the bold statement above suggests, in many cases antihistamines have to be taken in extraordinary high levels to receive even part-relief. For many sufferers no relief can be found.
I am part of a CU support group on FB and the cocktails of anti-histamines the members of that group take would leave you open-mouthed. We are not talking a dose of piriton here. Sufferers are having to take up to 10 antihistamines a day, alongside other drugs such as beta blockers and steroids. And this is just for partial relief, not complete.
Chronic urticaria is a very mysterious disease. Few people know of it and even fewer really understand it Some sufferers are allergic to foods or substances but others are suffering due to an autoimmune problem. This means that our own immune system causes damage to our own body. I am not allergic to any food types and I am not allergic to washing powder. (Although I am asked this on a daily basis). I am actually allergic to myself. I am allergic to my own body.
Urticaria affects us all in different ways. My urticaria appears daily no matter what I do or what I eat. I cannot make the Urticaria any better but I can make it much worse. My type of Urticaria is triggered by any stimulation of my skin. I cannot allow any part of my body to be cold. I often wear 3 or 4 layers and under these layers I have to wear themo-regulating tights. This can make dressing very difficult, and dressing for an occasion almost impossible. I hate the daily dread of having to find clothes that might actually help me get through the day. It is no longer a case of what I can wear to look nice or feel good. It is simply a case of finding clothes that can cover all of my skin and help me gain some kind of control of my symptoms throughout the day. If it is windy/cold outside I must cover every inch of my skin. However, my Urticaria is also triggered if I become too hot! Go figure!
Skin stimulation can also occur from touch. Sometimes I am literally unable to be touched by those close to me. That is extremely difficult to accept. At a time when you are hurting and scared and need a cuddle, you are unable to receive touch and comfort from those you love.
Treatment for Chronic Urticaria differs dramatically from patient to patient. The first stage of treatment is to take antihistamine pills. The second stage is to take ‘off-label’ levels of these pills and try various cocktails of them. I have tried at least 8 types totalling up to 16 tablets per day. These tablets can cause drowsiness and weight gain alongside other side effects. The third stage, the one I’m currently on, is to take Asthma drugs alongside antihistamines. The side effects may include behaviour and mood changes. For me, they gain no control of my symptoms. Even on such high levels of medication I suffer daily. The next stage is the use of a costly injectable asthma drug (Xolair) or drugs that reduce the immune system responses. Sufferers have varying levels of success with all of these medications. Ironically, I have an appointment with the consultant today, World Urticaria Day, to discuss my next steps.
In the majority of cases the exact cause of Chronic Urticaria cannot be determined. In these cases the disease is called Idiopathic.
Chronic Urticaria greatly impairs quality of life. It has completely changed me as a person. I have lost all self-confidence. I suffer from increased anxiety as a result of never knowing when the disease will strike each day and when it will finally leave my body or at least be controlled. I am extremely self-conscious. I have become uncomfortable in most social situations and have become awkward around others. I feel extremely unattractive. Urticaria affects your appearance massively. It may only be for a few hours each day but those hours are very hard to get through. I’m also terrified that one day the swelling to my face and throat might go beyond painful and become life threatening.
I am extremely lucky that I have a very understanding husband. Chronic Urticaria can put a huge strain on a relationship. Luckily for me that is not the case.
On world Urticaria day 2015 my hope is that we can gain a wider understanding of this mysterious condition that is having such a huge impact on so many lives.
For all those suffering with Chronic Urticaria, I feel your pain, your fear and your discomfort and my heart goes out to you each day. I hope that you find some relief.
For all those living with someone with Chronic Urticaria, I thank you for your patience, care and understanding. We could not go through this alone.
For all those in the Chronic Urticaria group on Facebook I thank you wholeheartedly for your support and kind words. This disease has turned my life upside down. The past 10 months have been filled with fear and with tears but you have helped me enormously. You give me support and you give me strength to get through another day. Prof Greaves, Dr Grattan and Dr Jones, I thank wholeheartedly for their outstanding level of professional care, compassion and understanding of this condition.
Thank you x
If you would like to contact me to discuss Urticaria and its symptoms, please feel free to contact me here. I would love to talk to you.
Since writing this article, Jen has been approached by national newspapers to continue to raise awareness about this disease. You can read her article in the Daily Mail Online here.