My journey started on a day just like any other. We had family around and were chatting in the lounge with a cuppa. I needed the loo so energetically ran up the stairs. On the way down, I stumbled a little on the bottom stair and my life has not been the same since. The stumble, it would seem ,was nothing more than a coincidence but possibly the last physical memory?
10 years of pain, frustration, hospital visits, and not too many answers ensued. I was placed under the care of The Royal Bromptom in London and was taken by ambulance when I needed to see the specialists.
It has been a long and hard journey, one that I am unfortunatley still on, but I am still here and grateful for all I have.
Imagine yourself as a Sarcoidosis sufferer…
Sudden Impact – Your life changes.
Can you just imagine sitting in that chair right now, then going to get up to make a coffee or answer the phone and not be able to for no reason at all? Waking up in the morning to find you are pinned to the bed, with some unknown force weighing you down. You can’t move, you can’t talk, your body paralysed. Waking up in the morning and you put your feet on the ground to stand up and have this shear pain go through your feet and legs, like your feet and ankles have been shattered with a hammer, Unable to walk from that point on without pain.
Imagine waking in the morning not feeling refreshed from sleep, combined with that worst day of flu where you are so exhausted you can barely raise your arm. That is how sufferers feel from the moment they open their eyes to the time they sleep every day with no relief. Many sufferers require more hours of sleep during the day to try to gain very little energy to do the simplest of task around the house. Just to make the slightest of movement takes a lot of energy, arms and legs feel weighted down like concrete blocks. If they don’t do much it’s not because they are lazy it’s because they are physically exhausted.
That throbbing pain you feel when you have flu and ache? Try to imagine that all over your body, but at the same time you have that pain where you have slept funny and don’t have full range of mobility in a joint, added with joints so stiff you feel like screaming. You have had an electric shock right? Add these sudden pains anywhere and everywhere randomly without warning. Then to add the finishing touch of burning and muscles spasms with the added sprinkle of the muscles suddenly giving way and refusing to work. You are someway to understanding.
If you are asthmatic you will appreciate how it feels to struggle for air. For those of you that have never had problems breathing . Think how it feels when someone very heavy is sitting on your chest you can barely breath.
In the sarkie world we call it brain fog. Sufferers with or without Neuro Sarcoidosis have reported affects of memory loss, it can be very scary and often frustrating. Can you imagine suddenly being unable to spell the word fish? Or do basic sums as add 10 and 34 together? What day is it today? Imagine you are reading this sentence write now and fully understand it. Only to find that if you read it again it would not have read how you had thought at the time. Have that happen on a regular basis and you would feel like you’re going mad. For sarkies our brains totally switch off, and those blank spots are entirely blank. Sufferers can have way too many of those and they last a lot longer. Recall memory can be very slow too known existent. Many describe it like a faulty connection on a computer.
Remember each symptom does not happen one at a time, a sufferer is bombarded head to toe with difficult symptoms all at once. Many sarcoidosis sufferers find it extremely difficult to explain how they are feeling. This is due to a lot of reasons. Many have been going through years of fighting, verbally, to be understood. They have reached a point where, you could say, it’s like speaking to a brick wall. Then give up and suffer in silence, smiling sweetly, hiding how they truly feel. They have the constant feeling of tiredness and exhaustion whereby the smallest of conversation requires too much energy. Through fatigue and often pain unable to find the words that will help others really understand. The extent of the pain they are in and mental battles they go through, feeling excluded from society, no-one really understands and no-one can really help.
Majority of sufferers we have spoken to have lived very energetic lives, only to find themselves waking one morning to be in sudden pain they cannot walk, paralysed for short periods or they gasp for air taking a couple of steps, with no prior warning of any health problems. Over the following years having one illness after another and never recovering. Their health constantly declining. It then becomes a battle never being able to make plans for the day as they have no idea what they are going to feel like from one minute to the next. Work and home commitments become hard to keep with many having to give up or lose their jobs.
Many sufferers have talked about the frustrations they have that surround them with this disease, stress has a tremendous impact with this condition as it releases a chemical tricking the immune system into thinking it needs to fight a foreign body, so it is something to be avoided as much as possible. The emotional frustrations that so many talk about are the failure to understand what is happening to them or help themselves. Having no answers, constantly feeling a failure, every second of the day, whatever they do their body reminds them one way or another that they have this disease, regardless of how much they try to fight to achieve this one task they fail. They feel a failure to themselves and lazy, a disappointment to their family and children, wanting to do so much but their body physically stopping them.
For many sufferers their lives changed overnight, losing so much of what they had, mentally it is hard to adjust to the change of having a life, looking to the future etc to suddenly having no idea what is happening to them, why they suddenly cannot do what they could do yesterday. Question’s never being answered to help them move forward and adjust to their disabilities, symptoms always changing.
Too many of you that are living with a sufferer or have family members with this disease, it may seem like they are always moaning about how they feel. This is never the case. If a sufferer explains how they are feeling it is often because they want you to understand. You may only get snippets of the problem ‘their in pain or this hurts, that hurts’ they are in intolerable pain physically and mentally and at the point when you hear about it they are crying for help or seeking a little support.
In a lot of cases sufferers have gone through years of regular visits to doctors and consultants with symptoms that are impossible to live with, making daily life and tasks hard, looking for answers only to go through test after test returning with clear results, or being told its nothing having their hope of recovery destroyed, to find themselves back at the start.
Sufferers go through unnecessary tests at this point to find at the end of this traumatic time you can imagine the frustration and anger that has built. So many times we have heard from sufferers that they feel they are going mad as they are either not believed or they are made to feel like they are imagining how they are feeling, with regular comments ‘ you look ok and well’ and being ignored, so does that mean there is nothing wrong?
This is NOT the case. Sufferers generally look fine and healthy on the outside but within and mentally they are in a lot of pain with their body and mind in constant conflict.
In some cases the longer they wait more problems start to present themselves, with other conditions and illnesses to cope with.
Sarcoidosis is said to mimic many other conditions, this means that although symptoms may look to be like a condition, when tested they return back negative. What does fail to be acknowledged by the medical profession is that although these test fail to present as a thought condition, the sufferer can still present identical symptoms, still just as painful and disabling, this is where sufferers are so often ignored. Medication used for that proposed condition will not necessarily work.
Knowing many of the medical professionals do not understand the disease or know how to treat it, It then becomes a fear when in the hands of emergency service staff, when they need them most.
Many sufferers have reported being turned away and left in the same condition they went in as there was nothing that could be done for them. To extreme cases whereby organs have been removed that was not necessary and death.