Sarcoidosis Association
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Understanding Us!

In this section we would like to give you some insight to what it is like suffering with Sarcoidosis. In the hope to give you a little understanding to help friends, family and carers appreciate just some of the affects Sarcoidosis has on a suffer.

We have also designed a booklet 'Being Sarkie' which gives a more defined and detailed understanding for family, friends, carers work colleagues to appreciate how Sarcoidosis affects us all. To obtain a copy just email enquires@sa-uk.org.

We are unable to detail all the affects but have detailed the most troublesome ones that so many sufferers have spoken about. That affect them the most both physically and mentally.

The following information, although somewhat long, is not to scare you and doesn’t necessarily apply to every sufferer, but certainly many will be able to relate to it in one way or another. Every individual suffers differently with some symptoms more severe than others.

Many 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 and been fit and active, 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, some frustrations that can be avoided with more understanding and better information and knowledge. 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, failing to complete the simplest of tasks such as hovering the living room, washing up, reading a chapter of a book. 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.

On a day to day basis 24/7 a sufferers mind is often focused on keeping themselves upright and going throughout the day, not because they are obsessed, but because this is the only way they can have a little normality without feeling a total failure or useless. If they didn’t, for many it can be a case of being in bed exhausted 24 hours a day in constant pain.

To 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.  

Stress from Medical professionals

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.

One day out of the blue, they are then often told they have lymphoma cancer or some other serious illness. Falling into a pit of despair but at the same time relieved they will finally get the help they need to feel better. The feeling of anger then sets in, that for so many years they had been made to feel they are imagining it all, and that no-one took much notice, to then be told it was extremely serious.

Sufferers go through unnecessary tests at this point to find at the end of this traumatic time, it’s Sarcoidosis and that a simple test could have determined their illness, which could have been found a lot earlier had someone listened to them. 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.

Sarcoidosis can be divided into two section whereby the sufferer can feel very unwell but it not necessarily mean it is life threatening. The division is a) life threatening organ involvement; and b) symptoms which may be wholly incapacitating but cause no danger to life expectancy. The latter (including profound fatigue, malaise, arthralgia, myalgia and eye symptoms) are more frequent than major organ involvement. There is a tendency for medical professionals to grade the severity of sarcoidosis purely on the basis of life threatening organ involvement (which is viewed as “severe”) and to regard incapacitating disease, which is not immediately dangerous, as mild.

However this is entirely misleading and not the case, symptoms of active sarcoidosis such as the above can be severe and render the sufferer totally incapacitated and disabled unable to work.

So in other words, a sufferer can have no organ damage yet feel extremely ill.

It is often misinterpreted as a lung disease whereby any symptoms outside the boundary of lung function is not considered an aspect of sarcoidosis, again not the case.

On diagnosis of Sarcoidosis, so many are lead to believe its like a common cold and will recover in as little as three months but told it will go away after a few years at most. They are told nothing on what is wrong and how to manage the illness and feel left on their own to cope.  They find themselves having to read and search as much information as possible to give them the understanding and knowledge to obtain some security and trust that they are receiving the appropriate treatment and care to prevent any further damage to their health.

Unfortunately, treatment differs from one medical professional to another, all having their own opinions and beliefs. The drugs that are used for managing the sarcoidosis aspect, many have serious side affects with long term use. Sufferers have stated that in the majority they have had no choice in deciding what medication they would prefer, or had any consultation on the side effects prior to administration.

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.

Imagine yourself as a Sarkie

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.

Profound Fatigue

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.

Joint Pain

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.

Breathing

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.  

Or try this exercise for size; Hold your breath and pinch your nose then when you feel you need to breath hold it longer, to the point where you are gasping for breath.

Another good exercise to try : I read once how a sufferer described to his boss what it was like. If you take a straw and squeeze the top so tight there is just a tiny prick of air, pinch your nose so that you don’t breath through it, then suck on the straw breathing in and out through your mouth. Hard huh?

Memory Loss

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 your going mad.

How about when you can argue a fact and whole heartedly know that you are right, only to find that your not? I.E. You just heard Mr smith leave a telephone message on your answer phone, as you didn’t get to the phone in time, only to go the answer phone and there be no message.

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 to 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. 

Quotes

“My family and children are on tender hooks, walking on egg shells most days wondering how im feeling”. 

“How will he/she be today, can he/she take us to the park”.

“I get so frustrated and angry at myself, when I go to do something easy like vaccum the floor or wash up a couple of dishes, only to fail seconds after I start”

“Being asked how I feel mentally, it breaks my heart and I could break down and cry to turn my children down for playtimes”

“I feel useless lazy, and a failure, feeling so tired I can’t do the basic household chores”

“All my energy is soaked up keeping my strength up I cannot physically complete these tasks at the moment”

“I am riddled with pain that I am forever told is in my head, think positively most Doctors say, how can I be positive when I have no idea if I will recover or if this is it for me now”

“My family do not know from one day to the next how I will be, I do not know, how can I possibly plan my life, my future, I already fear that at some point I will not be able to cope with the ongoing pain that is battering my body and often lose the will to live.” 

“I have lost everything I knew and was, my looks, my personality, my health, my physic, friends and family, morals and principles. I don’t know who I am anymore”

“ Those things I have for years taken for granted are so valued to me now. Simple things like walking down the road without having to think how to walk, or read a magazine without having to keep stopping, due to pain and discomfort”

“Why cant I spell simple words or do simple maths anymore?”

Now with an insight to how a sufferer suffers and how the illness affects them, you can understand why public and medical awareness is so important.

Lets eliminate some of the unnecessary problems they are faced with in the hands of ill read information and medical professional lack of understanding , help us with your Donations and sponsors to make the changes and help them.

Thank you so much .

 

 

Copyright © 2011 Martine Caitlan of the Sarcoidosis Association. Registration Number 330053. All rights reserved.