ITP support and help

In these days of Social Isolation as a result of the Covid-19 emergency many people are understandably feeling stressed and under pressure due to the uncertainty of the current situation. One of the Associations Patient Mentors recently produced an excellent article which was published in the Platelet Journal that was filled with useful tips and helpful advice on how to reduce one’s stress levels, we hope this helps.

Dealing with Difficult Emotions after ITP Diagnosis

The diagnosis of a long-term condition can be devastating, and a whole new mind set has to be found to cope with this life changing news.

This is a general article for those of you who are feeling distressed about your diagnosis of ITP. We can often feel anxious, stressed, low, blue, distressed and worried about many things that touch our lives. That is exactly why the ITP Support Association was set up, to help you.

If you are feeling suicidal, or wanting to harm yourself or another person, you must seek professional, clinical help at once.

It is normal to feel down at times, we cannot feel on top of the world every day. Life is made of black and white and at least 50 shades of grey! A surprise diagnosis, of a long-term condition, that we have never heard of before, can be a devastating shock. Fortunately, ITP is not usually a fatal disease, although rarely it can be. It is not something you should worry about unduly. This could blight your life, worrying about what might never happen. Don't let this worry ruin your life.

In answer to a patient's query in the ITP Journal, December 2019, page 20, our Medical Advisor, Professor Adrian Newland, wrote, "I can assure you that the risks of dying from ITP are extremely rare."

It is important to develop a good relationship with your medical team. Our Advisors suggest that the patient and their symptoms should be treated, not just the platelet count. This, and any other issues, such as drug treatments, need to be discussed and negotiated with your clinicians.

It is wise to have a few strategies worked out, to combat worry. You are your own best resource because you know yourself better than anyone else. When you are feeling less stressed, think about what you can use to help yourself overcome your anxiety. Fear of the unknown can be very distressing. You have made the first step by reading this ITP journal, The Platelet, to inform yourself about ITP. The Publications List is very useful. Knowledge is power, power over worry. Information gives you confidence and understanding about your condition and demystifies it.

The annual ITP Convention is a marvellous resource and the next one is on 9th May, in London, more details in this edition. Do try to attend if you can. Over twenty ITP Local Group Meetings have taken place and been extremely well received. Details of these are also listed in this edition. Patients welcome the opportunity to meet others with the same condition, in an informal setting to discuss problems, solutions and generally make friends. Many are surprised to find others have the same problems and worries and airing them really relieves their anxiety.

Anyone living with ITP can usually lead a fully active and happy life. You are living with your condition, not suffering from it. Accommodate your lifestyle to it and in most cases, there will be very little, if any, change needed.

Although you may not feel it helps to know this, there are many millions of people all over the world who are just like you, learning to live in harmony with their long-term condition that may be limiting. Some of the greatest people who ever lived, have had to change their attitude to themselves and their condition, to achieve a happy and fulfilled life.

What pleases you and helps you to relax? If you have interests that you enjoy doing, then make time, and go ahead and do them. Unless they are very dangerous like bungee jumping, weightlifting or contact sports, you should be able to do most things. If you are unsure, ask your GP or hospital medical team. In the end it will be your choice, and any sensible person will not take undue risks.

Having hobbies and interests is important and can be very relaxing and sociable. There are many clubs and groups around to join. Enjoying life and perhaps retirement, is important. Organisations like WI, U3A, Arts Society, Sporting clubs, book clubs, Ramblers, quilting groups, luncheon clubs, and many more, that you can think of and name, provide an excellent programme of events for people to enjoy. Some groups even do day trips, outings and holidays.

Phone a friend and be a friend by socialising with people. This need not cost a lot; it just takes a little effort to organise. A cup of coffee at a favourite venue can be a lifeline if you are feeling down. Sharing your worries with people and getting out to do something in a change of scene, can be a real morale boost. It can be your own talking therapy.

Try to smile, even if you don't feel like it. Speak to a stranger, just say, 'Good morning'. Do a good turn, such as giving way to traffic. You'll be surprised how good it makes you feel. No matter how stressed you get in a traffic jam, it won't change the situation, you will still be late, so put on the radio, listen and relax into the moment. The same for your ITP. No matter how much you rail against it, it will still be there to worry you. Learning to live with a long-term condition can be a challenge. Distractions help.

Mindfulness, meditation and prayer appeal to some people. Some courses are free. Many people find taking time out from the bustle and noise of life for a short time every day, is very beneficial. Lots of churches have social groups such as luncheon clubs, and bereavement support groups. Often you do not need to be a church goer or member to attend.

Your diagnosis may have been the tipping point, and there may be other issues in your life, that you need to sort out, which are adding to your stress. They may have been there before your diagnosis, but now they magnify because you are concentrating more on yourself and how you feel. As the majority of patients with ITP are over 60, many people live with other long-term conditions such as arthritis, heart disease, chest conditions and diabetes, to name a few of the more common ones. You are not alone with health worries. What is important is how you deal with them.

The Expert Patient Programme (EPP), which I have written in detail about in this column before, is a course for people living with long term conditions, to support them in coping with their health situation. All participants benefit. Find out if you can attend the 6-session course in your area.

The boring, mundane chores of life need to be punctuated with little treats. We all have things we have to do, but put a time limit on these, such as a 15-minute timer to do chores, such as cleaning the bathroom. When that is done, have a break, make a cup of tea and listen to relaxing music. Then tackle another 'must do' and you will get through the list quicker and feel energised instead of overwhelmed. If you get snowed under, make a little list. Then choose one thing to do every day that will release some of your anxiety. Lists can be made and remade. It is a great feeling of satisfaction to cross off things on the To Do List. If lists are not your thing, find an alternative to get through the things that are stressing you. Call in some help from family and friends. It is never one thing, such as your diagnosis of ITP, that is stressing you.  

Research has shown that time spent in nature is good for health and wellbeing, as seen on TV, Trust Me I'm a Doctor. There is now a new term, 'forest bathing' which means taking time out to go for a walk and be in a natural setting, such as a forest, park or other outdoor place, for at least one hour a week. The health benefits are remarkable on blood pressure, for example, and feelings of wellbeing.

Have a routine, so you sleep well, eat well, and have regular exercise every day. Having a companion to do these things with can be helpful to you both, through socialising and keeping each other going, especially in the winter when a lie in, and no activity, can be very appealing. Some local authorities have regular group walking schemes. Many people have a dog who keeps them company and gets them out for the daily 'walkies'.

By helping others, we can help ourselves as a volunteer. This is the feel-good factor that the brain switches on when we do pleasing things.

Writing your feelings down in a diary or journal can help. Maybe write a book about your experiences, poems, or your memoirs. Art journaling is very therapeutic, doodling and drawing in a specific book. Research your family history which can become an absorbing interest.

Write down, or think about, at least one thing that you are grateful for each day. Some lovely little things happen, that can lift our spirits. What lifts yours? This time of year, it is a joy to see the various spring flowers coming up. Look out for them, take notice of them, and enjoy them. Simple pleasures can be joyful. 'Every day is a gift' is the message written on a painted stone I have on my dressing table. A lovely, happy thought.

If you feel you cannot be bothered to do anything like this, and just want to stay in all day, on the couch resting, or in bed, eating chocolate biscuits, then it is time to seek professional help. Saying poor, me, and why me, will not help. Changing your attitude will. No one can do it for you, only you can do it for yourself. My daughter has lived with depression for many years. When I was very distressed about it, and wanted to help her, she said, 'Mum, I am the only one who can do it. I have to make up my own mind and do it myself.' That is one of the most profound things anyone has ever said to me. You are the controller of your own destiny. Make it a good one.

Concentrate on what you can do, not what you can't do. You may not be able to run a marathon, but gentle, regular exercise might be possible. Build up your goals gradually. A walk around the block can become a walk to the shops, or the cinema, or further afield to visit a friend. Howard and I are not natural athletes, but we have, over the last 2 years, built up our walking and exercise. I enjoy classes such as Yoga and Stretch at the gym.

Social media can be supportive but be aware of the fact that some people are not qualified to give sound advice. Beware of internet sites that promise cures, expensive treatments, and other such things. Always make sure that the information you are sourcing is genuine, and not after your money, or written by people with outlandish views.

Self-help books can be useful and positive. Libraries have books on prescription which are there to support health and wellbeing. Some outline CBT and other therapies and have workbook exercises for you to follow. It is worth remembering that just reading the book will not do it for you. You have to make the changes yourself.

If you have queries about your treatment plan, side effects of medication and other worries that need a doctor's advice, please make contact with the relevant authorities and agencies. Mental Health services are experiencing a great deal of over stretch and appointments are delayed but try and help yourself in little ways each day, and see if you can lift your spirits and feel more positive about your diagnosis of ITP.

 In conclusion, it can be helpful to consider a few previous points.

  • The boring mundane chores of life need to be punctuated with little treats.
  • Don't worry about what might never happen.
  • Worry will not change the outcome of the inevitable, it will just make you feel worse.
  • You are your best resource.
  • Find out everything you can about ITP and attend the Convention and Local Group Meetings.
  • Treat the patient, not the platelet count.
  • Get all the help you can.
  • Phone a friend and be a friend.
  • Use your friends and family to help and support you, and do the same for them.
  • Have a plan for every day.
  • Volunteer to help others and yourself.
  • Think positive thoughts and do positive things. Ditch the negative.

"If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward." Martin Luther King.

Please tell me what you think of these ideas and if they have helped. Also, your own strategies for dealing with difficult emotions. Thank you and good luck.

Rhonda Anderson - ITP Patient Mentor

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