Is this the New Normal? by Rhonda Anderson
When you read this, we will be in official Autumn. You will have heard the national sigh of relief that children have gone back to school, and the groan of anguish that a vaccine will probably not be ready until 2021.
It seems unbelievable that we are still in the Covid-19/Lockdown cycle and Spring and Summer are over. We all hoped that by now things would have been much more settled. To be honest, I did think it would go on for a very long time, and when talking to Mervyn Morgan, CEO of the ITP Support Association and Professor Adrian Newland early on, I wondered if we would be able to have a face to face Convention. In fact, it has come to pass that it will be a virtual event and takes place on the 10th and 11th October 2020. You can find details elsewhere on this website.
The present situation has made me use technology more. Thankfully, we have this wonderful resource. Apart from taking part in some ITP patient events, I have also been able to keep up with some things that cannot be visited, such as museums and galleries. Some bonuses of lockdown were the excellent National Theatre productions and Royal Opera House Ballets and Operas. If you are not interested in such things, I am sure you have found items to your taste to see during this time, as there has been a wide range of free entertainment and sport for everyone. Social Media and YouTube have come into their own. I am very thankful for the enjoyment they have given me whilst at home and I am going to continue using them. In fact, I have booked myself for a short art lecture course on Zoom which I would never have done before this. There are some silver linings to adversity, we just have to find them.
It must be acknowledged that many people are now fearful of going out and taking up normal life again, and this includes meeting friends, eating out and visiting hospitals for routine checks and operations.
Covid has posed many difficulties for patients taking up their regular Outpatient appointments and getting their regular blood tests. The Association ran a survey, 'ITP Treatment during the current Covid-19 Pandemic', after a number of patients had raised various ITP treatment issues as a result of the Covid restrictions.
In the survey 20% of patients did not have their bloods taken as normal for a number of reasons, ranging from the fear of Covid and Shielding, to being unable to get, or being refused an appointment at their GP, District Nurse and/or Hospital.
I have had these difficulties myself, although not related to ITP as I have been in remission for many years through having a splenectomy in 2000.
My husband and I both needed a blood test, in fact mine included my annual platelet check which I get through my GP now, as I am discharged from the hospital. Looking at the information on blood test venues, it was clear that the nearest one did not make appointments. We could have gone much further afield to two different hospitals where we could have made an appointment. We decided to brave the queue closer to home. There were at least 20 people in the queue in front of us. Thankfully, the weather was fine and not too hot, as the queue was along the street with 2 metre marks on the pavement. We were eventually seen, and all went well. I had asked the GP if they were doing blood tests at the surgery as before, but she said that was not happening now. These changes can be very difficult for patients with any kind of disability, physical or mental. It does show that the usual service has not yet resumed.
I also had a regular Outpatient appointment with ENT as I have a chronic ear condition. Two of my appointments were cancelled in April and June. Instead I had phone calls. As I have a long standing infection it was agreed by the Registrar that I needed to be seen, have a swab taken, have ear suction and have medication prescribed, but I was not permitted to come to the Clinic due to Covid restrictions on the hospital. If things got worse to go to Accident and Emergency at the same hospital. Eventually, I was given an emergency appointment in July and treated. Unfortunately, this has not resolved the infection. I have another appointment at the end of August. Needless to say, this has been very unsatisfactory, frustrating and stressful. I know many of you will have experienced similar issues.
It is difficult for hospitals too, and we all understand that, but there are two sides to this. The NHS is concerned that patients are not attending their appointments due to anxiety about catching Covid, but they are not putting in place easily accessible ways for patients to feel confident to keep their appointments for clinics and also surgery. Myself, I am not afraid of going to the hospital clinic, I want to be treated and get better. I realise that there is a small risk. If the hospital is clean and all the precautions are put in place, then the risk should be minimal. Masks have to be worn, Hand Sanitiser is used, and Temperatures taken. Sometimes the hospital will provide a mask, so you need to take off your own mask. I have been in correspondence with my own hospital about all these issues and I am pleased to say there has been some improvement.
Now that the number of Covid infections is lower, there are designated Covid hospitals within Trusts, and the other ones without Covid patients, are designated Green. This is so ordinary day to day NHS work can continue in a Covid safe environment.
Regarding blood tests for ITP, it is possible that unless you are experiencing symptoms, it is not necessary to have so many blood tests. Of course, if your ITP is very troublesome then a blood test may be necessary in order to gauge treatment options and the effectiveness of your present treatment. We always say, 'Treat the patient, not the blood count'. This means assess the condition of the patient and their ITP symptoms and go from there. A blood test may not be necessary, but your medical team will decide what is needed, so keep in touch with them.
If you have any concerns about your general health, your first port of call is your GP. Most are now doing a lot of phone consultations. Ours has been doing this for many years, so they are used to it. You only go to the surgery if necessary. I have been, and it is a well organised Covid safe environment. There is a huge concern that people with suspected cancer and heart attacks, to name only two, are declining to seek medical help. Of course, this is going to have great negative implications for health care and the rise in more advanced cancer cases presenting at a late stage. Do not hesitate if you have any worries, phone your GP today!
My projects have kept me busy in lockdown. I have not cleaned and de-cluttered my house from top to bottom, but I have done a few things and recently it has been mending some clothes. Yes, they are old, but they are comfortable and so I thought it was worth investing some time and a little money to renew the elastic in several pairs of trousers that have gone slack. I am really pleased with this and several other repairs. In fact, I have been surprised at the pleasure and satisfaction this has given me. Anthony Herd told us in the previous Platelet how much pleasure his garden has given him, and I can also relate to that.
Your really big lifetime project is yourself. This is not selfish, it is prudent. You only get one body and one mind, so it is worth investing time and money in yourself. Like so many others, we couldn't go on holiday abroad, so we went and stayed in our son's house in Surrey, whilst they were away on holiday in Devon. It was a really enjoyable and lovely 5 night break, and a super uplifting mini holiday with a change of scene and a chance to explore a different environment with various walks. I was even able to follow my Zoom Yoga classes over there, so very satisfying.
If you are unable to get away, carve out a bit of time at home to do a favourite thing, watch a film, go in the garden, phone a friend, have a relaxing bath and so on, to give yourself some special 'Me' time for an uplift.
We have also visited some friends in their garden, and some have come here for garden visits and that has been an excuse to make a cake! I have appreciated the slower pace of life and worked out a daily routine that suits me. Hopefully, you have been able to do the same.
I cannot finish without asking you a question. How is your smile? Are you smiling as much as before Covid? I am not. I realised this some time ago. The reasons are many. One being that you do not meet people and so there is no need to smile at others, which we do when we meet and talk. We probably don't smile at our family as much as we smile at our friends. Staying at home on our own or with family members, probably doesn't call for as many smiles as mixing in society. I have resolved to smile more. Smiling makes you feel better. There is a lovely poem about smiling by Spike Milligan.
I won't temp copyright law by printing it here, but you can find it on the net and I am sure you will feel it has added weight for our time…
Keep smiling! Stay safe and well and enjoy every day, it is a gift!
Smile: A Poem by Spike Milligan
Smiling is infectious,
you catch it like the flu,
When someone smiled at me today,
I started smiling too.
I passed around the corner
and someone saw my grin.
When he smiled I realized
I'd passed it on to him.
I thought about that smile,
then I realized its worth.
A single smile, just like mine
could travel round the earth.
So, if you feel a smile begin,
don't leave it undetected.
Let's start an epidemic quick,
and get the world infected!