Living with a loved one who has Fibrolmialgia - All loved ones and/or carers should read this entire thing. If you don’t have time please print it and read it bit by bit but don’t rush through it and risk missing anything. If you really love them put aside the time and make the effort. The biggest obstacle for Fibromialgia relationships is selfishness. Please be honest with yourself as you read this. Think of every time youve been in pain- operations, bruising, nerves, muscles, migraines, nausea and vomiting- then add it together and realise it seems impossible that anyone could handle that non stop. Would you want it? Have you ever had a Dr tell you to rest and recover, maybe from an accident or operation? How did you feel, laying around in pain and dizziness, knowing what needed doing and that you couldnt do it? Did you rest the entire time or did you get frustrated and bored and get up and push on? Now imagine its constant so there is no period where you can just push through- the more you push the worse it gets after. Could you stand that? When you see a paralysed person in a wheelchair or bed, do you think how lazy they are? Do you resent that they wont come play with you, or that they need you to stop what you are doing to get them a drink because they cant do it themselves? Of course not! But a fibro flare sufferer can be in more pain than them, can have no muscle control and be unable to do the simplest thing, but by standing up to try, even if they fall straight back down, they have given you the impression that they could do it if they just tried- well they just tried and guess what... they couldnt do it. Does it get exhausting putting up with the uncertainty all the time? Seeing them have good days then have really bad ones? Is it frustrating not knowing when the bad day will hit, not being able to make definite plans in case they cant follow through? Be thankful! At least they have good days where they can help. Imagine they are quadriplegic- how hard would it be being a carer for your loved one then? Ask someone who is and find out. Wouldnt they give everything for one good day, even if they didnt know when or how long itd last? Do you walk past or lay next to them and hear whining and groaning and think they are whinging for attention? Have you considered that when you leave they sit under the shower and scream until the neighbours start to worry? Stress makes it worse, seeing their loved ones being helpless to stop their pain makes them both stress so they hide the pain. They complain about little things like flu, blisters, bruises, sunburn and scratches- things normal people cry over but Fibro sufferers consider amusing distractions from the real pain and something they have in common with their friends to bond over. When you hear a whimper, its not a plea for attention, its an attempt to avoid attention but the pain is so unbearable they cant hold it all in and a sigh, a squeak, a moan or a groan escapes. Dont make a fuss- they obviously dont feel up to talking about it and dealing with seeing you stress because of their suffering... but dont imagine it was for your benefit. Dont playdown their pain so you can feel justified being resentful and frustrated with them. They are doing their best! They have an abnormal ability to handle pain- if you felt what they are feeling right now you probably couldnt manage it- they only manage because their body has had years of training- emergency procedures shut off this valve, release more of this enzyme, evacuate this section, call for more focus right here! Unless you have spent years in their body- DONT TRY TO JUDGE OR COMPARE IT TO YOURSELF! You have no idea. Not sure if its real? Go to the doctors. See their charts, ask why they are on restricted meds, read a Facebook blog or two on the disease. Whether they are a complainer or a holder-back, if they whine to you they need you, they think you can handle it and they are trusting you to support them- not just outwardly but in your brain and heart too. You arent just supporting a mentally unstable person, you are supporting a physically disabled person. Tough love doesnt help, condescension and patronising IS NOT USEFUL! When they cry or whimper and you say you wish there was something you could do and they say just love me and get me a water and leave me alone to recover that is all you can do at that time when they arent well enough to explain it all to you. But you could remember that desire to help, that helplessness you felt so that when they do ask for a simple thing like a massage, or a meal, or to be excused from physical activity you dont resent it- you embrace the chance to help and appreciate that they are making the effort to explain to you, to include you, to expose themselves to you! You would do those things for a guest, a family member, an old friend... why cant you do it wholeheartedly, and with your best effort, for the one you love? Now- Fibro Fog- Da-dum! Or should I say Duuuh Dumb! They all get it sometimes. This is not a sign of weakness, in fact it is a sign that they are coping with handling more stress than others! The brain only holds so much information and when it is full it starts overwriting itself. They try to hold on to important things- normally things about you- what you asked of them this week, what you like to eat, what assignments you are stressing over and want help with. A moment of fog can last indefinitely but it will pass eventually, or at least there will be brief times of clarity. If they say something wrong because of fog they will appreciate you correcting them kindly so they dont make a fool of themselves, and maybe this time itll stick. But, and this is really important (!!!), they are not stupid! When they have specifically tasked themselves to remember something with the intent to discuss it with you later and they are adamant they have it right, dont be a baby because you dont like the sound of it. If they have a fog they are aware of it. This means when they dont have a fog they are also aware of it! Blaming something they say on fog, or diminishing mental capacity as some shallow minded idiots call it, because it makes you look or feel bad is NOT ACCEPTABLE! Please realise that you also get things wrong, you get frustrated and distracted and emotional and you are not always right. They love you so they will not want to hold onto and bring up every time they were right and you were wrong, but you need to remember these times because if they are adamant that they are right, and especially if it is something emotionally significant to them, they are probably right. Your automatically assuming that they are justifying or covering up a fog is dangerous and painful to you both. Remember a fibro fog sufferer is more likely to know when they have forgotten something because they are aware of the fog and have devoted extra energy and resources to filing that info. If you arent entirely sure you are correct then it is more likely that you have had a hissy fit or were tired or playing on your phone and did something stupid and cant remember it- grow up and own up, dont try to pin it on your loved ones disease. If someone smashes into your car and its not your fault would you want your loved ones adamantly claiming you did it and just dont remember because you once got really tired and fell asleep in front of the TV? Its stupid and senseless. With a loved one unable to hold down a job its natural to be stressed over money. If your fibro partner doesnt get compensation then you may be tempted to resent them because you are bringing in the income and supporting them. Consider this- if they were in a wheelchair and the government refused to pay them disability assistance who would you be mad at- you partner or the system for not recognizing them? Just because there is no wheelchair Fibro sufferers are often ignored. Dont be a part of that ignorant crowd- educate them and fight for you partner. If you do get compensation appreciate it. If they qualify for compensation but you earn too much that is a blessing, not a cause for complaint. Be thankful knowing that if you should ever be unable to maintain your income there will be income from them- an insurance fund your partner runs and that doesnt cost you anything. Either way, talk to them about money. If either of you feel guilty or resentful over the lack of income try to work on lessening your expenses also. Never feel like they arent helping- every meal they make, shopping they do, cleaning they manage, hug they give you contributes. And every penny they pinch helps you both. If you think they are spending too much discuss it with them and find out. Most likely you dont realise the effort they are putting into saving with coupons and specials, and how much a toothbrush or towels or workboots really cost, but if they are wasting money you need to address the issue. Make sure, however, that you are not wasting money yourself- just because a paycheck is in your name doesnt mean you can spend it wantonly. They may view that as an invitation to spend equal amounts themselves to reinforce to you that they should be considered an equal contributor to the relationship. Dont let money become a stumbling block to a happy life, there are too many sad stories in that category already. Consider famous fairytales and dramas - humans need relationships more than they need money and they will give it all up to get them back if they get the chance - you don’t know what youve got until its gone.
Posted on: Fri, 15 Nov 2013 23:11:26 +0000
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