Hi everyone! Seeking for advice and support!!!

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Hi everyone! Seeking for advice and support!!!

Postby *karina* » Fri Feb 14, 2014 6:00 am

Hi! My name is Karina. I am 37.

I suffers with Fibro for many years and only last year I was officially diagnosed by my Rheumatologist. On top of that my husband got Double Kidneys Failure for over 5 years and under dialysis treatment 3-4 a week at the hospital from last April. We have a lovely child, boy, who is a great rugby player and adorable toy poodle- our princess girl- treasure of our family. :-D :-)

After I lost my mother because of cancer, the biggest shock for me was to loose my husband back in 2008. 3 times we where loosing him at the hospital and still, thank you to his doctors, he survived. I always said to him- he won his lottery for life! I have spent over a month next to his bed at the hospital . In the end he was lucky enough not to have dialysis and come back home for Xmas. It was the best present for all of us! Doctors are still amazes about him as they believe that after all he went through , he shouldn't be with us now. Students in university now studying his case.

Time was ticking, year after year, he become worse and worse. All these years my husband struggles but works full time. Squeezes his teeth and works to support family, to pay mortgage...to help his brain ticking and feel like a man. No matter how many times I asked him stop working, he wouldn't listen to me. Very proud man!

The situation is very bad now. He is admitting that he cannot work any more. If he stop working, we wouldn't be able to pay mortgage . Now that he is on dialysis and it is not working well for him unfortunately, he cannot walk at all. Every minute he spend at home, he is on the sofa, he cannot clime stairs, he slip downstairs on the sofa bed, he cannot use bathroom or toilet. It's become unbearable for us to live in our house as he cannot move around.

On the other hand, I am completely broken down with Fibromyalgia. After I went through all what my husband is going through, it's only making me more poorly. Constant stress and worry about his health, bad thoughts- what if he cannot make it, all the physical and emotional pressure on me. My husband cannot perform any physical work at home, full of his own feelings and thoughts about his own health, so there is not much space for me, I must fight Fibro myself as well as looking after everybody in the house, food shopping, cleaning, cooking, washing....working 30 hours on my feet...and deal with my emotions plus some how support my husband . Terrible situation!!!

I am suffering with a lot of pain, cannot clime stairs, some days crawling to bed . On top of that I have been poorly since 20th of December 2013 and developed Bronchitis now. I just cannot read of it. Feeling very weak and dizzy. Clogged up, sleep, sleep, sleep. I already been on 3 different antibiotics and course of steroids. Just as I thought I am getting a bit better, extreme fatigue started and looks like I am back to square one.

I have been out of work all these time. My girls at work are desperate for me to come back as I am their Supervisor and it is a lot of responsibility. Frankly speaking it is getting more and more difficult to work these 30 hours as I am on my feet all day running, then I am coming back home and cannot do anything, dropping to sleep. During weekends I am in bed recovering from work. So nothing done in the house, it's look a mess!!! I can hardly manage concentrating and every day catching myself standing in the middle of the room and have no idea where to start. Then turning round and sleep for a half of the day as I do not have strength to deal with anything.

We both struggling climbing stairs, OT made a railings for us but couldn't finish because one of the wall is empty inside, therefore we cannot have railing there. Since it isn't possible, we wouldn't be able to have a stair lift as the wall structure wouldn't hold it. I am fed up undo and do the sofa bed for my husband downstairs, it's making me Poorly every time I do that. Maintaining the house become difficult too. So we decided to sale our house and now waiting for completion. Instead we want to apply for a council house. Any idea how successful or not we may be with our application form???

I am very scared that we will end up on the street after 8 weeks. We have no relatives here to help us. Both of us are extremely not well and cannot cope in our house. My husband wants to finish work as soon as we sale the house and complete. He just cannot cope any longer, but doesn't want to stop working now in case something will go wrong with house sale. Renting privately ? Who will let us to put a stair lift in there own house? Plus who would let us to rent their house, disable husband, without a job and me falling apart???

Please, any ideas how to help this situation, how to read of bronchitis and maybe who to talk to about housing??? Any suggestions are very welcome as I am sooooo tired to fight on my own all these years. My husband isn't a huge help at all.

Thank you so much in advance , love you all, thinking of you all and very pleased that I found this website, forum and all of you!!!
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Re: Hi everyone! Seeking for advice and support!!!

Postby Itsnotinmyhead » Fri Feb 14, 2014 2:56 pm

Sending a welcome and gentle hugs.

I too have just joined the forum and find it full of warmth and lots of helpful information.

I don't know much about housing, but could you try speaking to your local housing association as soon as you can explaining your situation? If they cannot help, ask them who can.

My mum has just had a stair lift fitted and it is not attached to the wall at all, the rod is fixed to the stairs with a few screws, so I'm sure it would be possible to have one fitted in your new home.

Also find out exactly what financial help is available to you while neither you or your husband are working. Knowing what you have to manage on is easier than the unknown. At least you have a figure to work with. In my experience the unknown is always more stressful than knowing.

I'm so sorry life is so difficult for you and your husband and understand how lonely it must be for you without family around you.
It's good you have found your way to this forum.
Keep in touch.
“I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
― Maya Angelou
Itsnotinmyhead
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Re: Hi everyone! Seeking for advice and support!!!

Postby denys » Fri Feb 14, 2014 4:52 pm

The wait for council houses is extremely long and with you having your own home and selling it they may say you have deliberately made yourself homeless and so you may find your only option is to go into private rented property for now, with your husbands health issues you should be able to get some help with costs which may make things a bit easier.

If I were you I would try to make an appointment with a citizens advice bureau (CAB) you should have a local one in your area. They should be able to help you with benefits and the options you have regarding housing

I hope you get on well and manage to get things sorted out to take the pressure off both of you
Denys

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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Re: Hi everyone! Seeking for advice and support!!!

Postby *karina* » Fri Feb 14, 2014 8:32 pm

Thank you so much for your replies and advices. Think i will go to speak to housing too. See what they got to say. Not much time left until we complete the sale, i must find a place where to move my husband. I can understand that it will be tough, but seems to me we do not have much choice. We own money to people and they waiting when we complete too so they can have money back. I can see there are many people on the forum struggling and worry in fear of loosing their houses due to illness and not been able to work. I feel for you all! I will not give up just now, i will fight as i cannot my both man stay on the street or in the hotel. Think there should be more support for people like us! We worked very hard all our life, like all of you and never asked for any help. Hope they would recognize that we genially need a help now. :-)
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