Rebecca said it straight!
When Others Don’t Understand How PH Impacts Our Lives
Sometimes (okay, probably more often than not) you meet people who don’t understand your illness. They take breathing for granted. They don’t even notice their lungs most of the time. They don’t understand how you struggle some days, gasping, dealing with chest pain, unable to do much. And they certainly don’t understand that some days are okay and you’re actually able to do things.
They may claim you’re a liar. An exaggerator. A hypochondriac.
In times like this, it’s important not to doubt yourself. Do not bend to fit their wishes, or their limited understanding of pulmonary hypertension. Instead, use it as fuel. Educate them. Talk to them. Tell them how some days are worse than others, just like for them. Doesn’t everybody have bad days?! Perhaps ours are just a little more severe sometimes. Explain to them that our lungs will be different on days when we eat too much salt, when the weather is too hot or cold, or if we are adjusting our medications.
Pulmonary hypertension is not a “one-size-fits-all” illness. Everyone is different. Sometimes that is frustrating. When you’re desperate to meet someone who is exactly like you — suffering like you, feeling the same — you won’t find that person because no one is the same. And I think a lot of times, when people hear an illness term being used, they expect it to be the same for everyone.
You’ll never be 100% understood, and it’s easy to be upset by that or become angry when people don’t get what you go through. But being weighed down by anger and frustration won’t do you any good. It won’t make them understand better, or apologize for their flip remarks.
Remember that you have control over only you. How you react. What you say. How you teach them. How you love them, even when you’re furious that they don’t get it.
They may question it, but we’re living it. So, let’s make it a life worth living.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
All of us struggle trying to get our family and friends to understand our ph. How it affects us, why we can do something one day, hour, minute and the next it is an impossible task for us to do. If you struggle to find the words to explain it, bang your head in frustration at them not really having an understanding then you could show them these words written by a ph sister who sadly just lost her life to ph. Looking good, fit and well on this picture nobody outside could see what lurked beneath and sadly she has died. She was hiding a disease inside her body that most will never have to deal with, never have a true understanding of it. The words she wrote are so profound, so very very true.
So Rebecca has died, so suddenly another young beautiful girl taken from her loving husband, family and friends, taken from the ph community of brothers and sisters worldwide. How my heart hurts for the pain and suffering others now will be going through with the loss of her.
For us as a community Rebecca left us this amazing piece of advice. Please read it, take it to heart, copy it, do whatever you like but do not be afraid to thrust it into the faces of the unbelievers, the ones who say “ it can’t be that bad” or “she is making it up” etc. “She/he just wants sympathy” is another one thrown at us sometimes. No we don’t, we want a life, a life where we can breath, where every day is not measured in “spoons”. (read the spoon theory) or biscuits, my blog That’s the way the cookie crumbles.
So I say thank you to Rebecca who left us with this wonderful article about living with ph. You inspired many on their ph journey and you leave behind many who are shocked and saddened at a life lost too soon. Breath easy now Rebecca. xxx
Wake up, it’s a beautiful morning.
I woke early today and the air felt crisp and clean. I could have stayed in bed for a while, after all it was only 6. 15 a.m. but why waste the day. I am always well aware that our days change in the blink of an eye so I decided to “go for it” . Donning my outerwear to keep me warm and my trusty buff, a very necessary part of my outdoor clothing when the air is cool ( I use it as a balaclava to cover my mouth from the cold air) slipping on my light weight but warm RAB jacket to protect me from weather in case it turned colder and my trusty boots I was away.
It was 6.45 by the time I left our apartment. The world was just awakening and sleepy dog walkers passed me by with a weary “hello” , commuters that began work early were on their merry way in the few cars that whizzed by me. An ambulance screamed past with its lights flashing but no siren was necessary as the roads were pretty clear. As I passed the post office in the village I could smell the fresh bread just out of the ovens as this post office is a bakery too. I almost went in thinking a nice hot t cake straight from the warmth of the oven would be a lovely start to the day but I restrained myself and continued on my way. Down the hill I wove my way, how lovely that lungs that cannot cope with the slightest incline can actually embrace the downward sweep of a hill. Past the village school, empty now as it was too early for the children but I knew in another two hours it would be different again, bursting with children, running, shouting and screaming with joy as they played their merry games before the school day began and onto the path I travel many times between the river and the canal. Sometimes this is on my scooter but today I knew it would be a day I could do it on foot. Oh happy days.
The rain that had poured in the night had left many big deep puddles. I had no choice but to splodge through many of them but my trusty boots could take the pace. From time to time I walked around them onto the grass that was still white with an early morning frost, the crisp sound of my footsteps splintering the ice was lovely. The river flowed and splashed merrily against rocks and the sound was very soothing. Onwards through a thick blanket of crunchy fallen leaves, beginning their journey back to the earth, turning to mulch to help sustain new growth and on I went until I reached the canal. Oh my life felt good this morning,
The world was coming alive the more I walked, I saw the builders in their high vis jackets beginning work on the mews houses being built overlooking the canal. Runners were passing me by at a fast pace, one that even were I well I could never have dealt with. The ducks and mallards were embracing the day, preening their feathers. I saw a pile of feathers at the side of the tow path that could only mean one thing, one bird had been taken for a meal. Was it a fox or a mink, I will never know but life goes on.
As ever I gave thanks I am still alive to see these things, to smell the fresh morning air to all my ph team. I know without them I would long ago have been dust, gone, taken with ph. Also I am always thankful for my husband, who, when I wanted to give in, when the pain became too much would make me pull my socks up, always with the hope of a new day. That was at the beginning of my journey, before I learnt just how much strength and stamina I had, before I decided to fight this ph.
It took time, I won’t deny to get to this stage. After a year of doing nothing to begin to get back into the world and try to become a person again, not the blob in the chair. It would have been so easy to just sit, let the people around me take care of me but I couldn’t do it. I began slowly to build up stamina, you cannot do it in a day, you need patience. Excercise CAN be done in a chair I learnt. So over time my life has changed. Like everyone I go through periods where I can do very little, my husband takes over without asking, he knows I need help. Then when I can do I DO! Like today, I knew I could so I did it. Tomorrow may be a different day, our future is not guaranteed.
It did remind me of the day I went for lots of tests when I was first diagnosed. They did not make me do the walk test as I was bed bound but they did put me on the machine that tests how much air we can breath out. I thought I did well and it was years later when reading something in my notes that I saw that they counted the test invalid as I could not even blow enough to register, on the machine. My stubborn streak helps. I try not to give in, to strive to push myself. If I leave this world tomorrow I know nobody can say I did not do my best, that is all anyone can ask of their bodies, do your best for yourself and the people around you. We are all different with ph and I am aware some can do and some can’t do things, all anyone asks is that we try. Tomorrow may well be a duvet day, how well we know we push ourselves one day and pay the price the next but it was so worth it. My day was a true ginger biscuit day and I thoroughly enjoyed every minute of it.
PH and Pregnancy
I have just received my magazine from Sheffield, my pulmonary specialist unit. One paragraph was so lovely to see for those with ph who are wishing to have babies. It states, and I quote -
Staff at Sheffield have reduced the risk of pregnancy related deaths from 30 -50 per cent to about 10-20 percent, Members of the team have been involved in developing international guidelines for managing PH in pregnancy.
Just one more reason to be proud of my A Team at Sheffield, they break boundaries.
Lyz returned from her visit to her transplant clinic and all is good. Her lungs look great. Her feet still are painful and she still has six weeks to go before she can drive so she is now accepting visitors as she cannot go to them. For obvious reasons your health needs to be good if you are considering visiting, colds and coughs are a no go zone for Lyz so take care. I am hoping to go and visit myself in the next few weeks, I can’t wait to see her, and this because a donor was thoughtful enough to put their name on the register. Becoming a donor can transform many lives.
Keith Andacky - Denervation
All went well with his denervation. He has been told it may take months to notice any improvement and I second that but I know he is pleased to have had this done and now looks forward to a better life, His lovely wife said she has lots of jobs lined up for him when he does feel better LoL, Hopefully easier walking when his pressures drop. Go well Keith, onwards and upwards now.
Waiting for it’s hat!
Our house is really coming along but we have now come to a standstill as we await the steel that is needed for part of the roof that will form our covered terrace, So most of the tiling us done but that part will be the brim of the hat, it will keep out the worst of the wind and rain over the terrace. The waiting game begins again but hopefully not for too long. I know the windows are going in shortly and then the joiners can begin.
We were invited out for a meal with our family for Mother’s Day and it was the first time I had seen the new house in a while. Colin decided the site needed a tidy up and the contractor agreed so hopefully that job can be done whilst they await this final piece of the roof. It has been difficult for the builders as our plot is not the biggest and what with their comfort cabins, scaffolding etc there has not been much room to store things enabling the site to stay tidier. Also a lot of railings are up to keep the site safe taking up even more space on an already restricted site. We are aware that this is a small cul de sac and we need to make sure we keep the place neat for the ones that live on it.
I am so cross that I never thought to take pictures of Izzy when we went out for Mother’s Day. She looked a picture in a fabulous skirt and top, very pretty, All three moms were given a drink of prosecco when we went to the restaurant but of course not Izzy. She did leave with two bunches of daffodils tied with a silver bow from them restaurant so they will now be in her bedroom. Izzy is sleeping here this weekend and I am not sure how she is going to feel when one of her tasks is to pull apart all her Lego structures and re box them. Very necessary as the whole apartment is being decorated ready for when we leave, All pictures, memory box, ornaments are coming down ready for painting. I see no point in rehanging them so they will be boxed up ready for our move.
Thank goodness for all the masks I bought when the flue season was here. When the paintwork is being sanded down it really gets to my lungs. It was driving me mad coughing until I remembered them and I am wearing one now as I type this, Yes I may well resemble a rooster with its red valve and red straps but if it saves my lungs from being filled with the detritus of old paint I do not care.
It is beginning to seem real at last, our moving. We have been and still are happy here but my dream to live next door to Izzy and to have my own terrace is beginning to get more real with each passing day.
Spring is in the air yet we are told to expect snow again this weekend. We are surrounded here with crocuses covering en masse all the verges and parkland, how beautiful it all is, Right now life is good, I intend to cherish every minute, As you can see by my opening paragraph it can so easily be gone, Make the most of your time, as the saying goes.......wake up and smell the roses.
Once again such a sad way to start my blog with but necessary I think to show how this young girls writing relates to us all.
Take care and warm love to you all. Please remember a comment, no matter how small means so much to me and, I love them all.
Love Carole xxxx
P.s. as suspected today an almost duvet day but well worth it for my beautiful morning.