The long and drawn out process of applying for a Disability Funding Grant came to a satisfying close at the beginning of January. 16 months of assessments by my Occupational Therapist, form filling and obtaining quotes from builders and suppliers accumulated with a letter informing us that our application had finally been successful. It’s a weight off my mind knowing that we can now make the house safe for me to live in.
Just imagine struggling to do everyday tasks. Regular falls in the house and down the stairs, not being able to get my wheelchair out of the house without help and then your occupational therapist doing a revision assessment of the aids already put in place and informing you that your home, the house you have worked hard for, are raising your children in, is no longer safe for you. It practically broke me. Plunging me into a very low mood. Questioning whether to sell our house and move away to a more suitable home, perhaps bungalow in a cheaper area. My OT told us about the Disability Funding Grant that is available from the council to help disabled people make adjustments to their home. It’s a means tested grant and you need to be in receipt of certain benefits and/or have an income under a certain annual amount.
Originally we were applying to have a wet room installed so the shower was level access, a stair lift and a step lift installed but one of my children has chronic pain syndrome and finds relief from sitting in a warm bath. My children will always come first so we are looking at other options for the bathroom.
Mid February the stair lift is fitted. It took a few hours and has made a massive difference. It’s not the fastest of speeds of ascent rent and descent so there’s no chance of taking off and flying out the bathroom window. No more falling up and down the stairs 😄 No more injuries. I can’t tell you the relief! The cats are dubious about the contraption running up the side of the stairs and view it with an air of contempt.
Mid March brings the start of the outside ground work so the step lift can be fitted. Skips delivered, cars moved, building supplies delivered, concrete steps removed and a drop that feels as deep as the Grand Canyon appears at my front doorstep, and mud, lots of mud!! Due to the great abyss opening up at the front of the house it means I’m starting to suffer with h cabin fever. I can’t get out without help from the hubster and that’s going out the back through the garage. The builders are nice enough but the noise is driving me up the wall. I have no idea how they managed it but they kept tripping the fuses and the house alarm kept being triggered. Oh man I was relieved when hubby and kids came home. Tuesdays are never good as it’s methotrexate hangover day and all I want to do is curl up under a duvet and snuggle with the cats until the kids and hubby come home. Obviously that hasn’t happened today and I’m running on fumes. It will all be worth it in the end. I’ll be able to get my wheelchair in and out of the house without any help, struggles or problems. I’ll be safer as I can use my power chariot rather than my crutches and in theory I’ll have more independence. I can’t wait!
For anyone wondering how they could possibly afford the adjustments to their home to make is safer and more accessible I recommend applying for a Disability Funding Grant. Yes, it’s a drawn out process and is far from being a quick fix but it is worthwhile. I’m glad we applied. Here’s to less injuries, falls, struggles and challenges in my own home.
Tuesday 20 March 2018
Monday 12 March 2018
Not A Lot To Ask?
We all do it. We all push our bodies to the limit but for those who have the challenges of a chronic illness, autoimmune diseases, chronic pain it takes days to recover from a day or possibly 2 of enjoyment. Where someone who isn't wonky and creaky can go out all day and then have an enjoyable evening with friends and family, goes to bed of a night and if they are really unlucky wakes up the next morning with a hangover. For others who have rheumatoid arthritis or fibromyalgia they have broken sleep due to pain, wake up still tired, stiff and in pain.
I write this edition wrapped up in the duvet, propped up with pillows, with a tear stained face, willing the medication to do its magic.
I woke this morning, pretty much like every morning, stiff and in considerable pain. I couldn't bare for my lovely hubby to touch me. I know he feels rejected and that makes me feel useless, a failure as a wife and a lover. He says he understands and he loves me, so at my really low points I have to cling to that and hope that its true.
Over the last couple of days I have pushed my body too far, sat on plastic seats where I really should have used my wheels, and survived off cups of tea. I used my crutches because I know space is at a premium at dance competitions. I wanted, and succeeded in supporting my daughter and her dance school at this weekend's dance festival. Moo only had 3 dances over the weekend and we could have arrived, danced and gone home, but we arrived early both days and stayed later so we could watch and support her team mates. By the second day I'm shaking, feeling sick, running hot and cold and I'm short tempered due to pain and frustration. I really should be able to support my daughter without all this shit. The night before I have taken oramorph on top on my usual concoction of pain relief.
Any dance mum will be able to relate to the rush of getting hair and make up done prior to a performance. My hands were shaking with pain and stiff with arthritis. My frustration with myself is mounting up and I know my daughter is getting nervous and her behaviour reflects that with her attitude and the climbing on me etc and I snap. I shouldn't have done, it's not her fault. She knows mum hurts, she's known nothing else, its her life....mum struggles, mums in pain, mum cant do things other mums can do. I try to hide it as there are very few mums who understand and the person I would have hoped to understand didn't. Sometimes I question friendships but its more down to the situation and people not being able to see past the end of their noses wrapped up in their own little bubble....that's fine too. (there are a couple as they battle the same struggles and its nice to know there is someone who knows exactly what its like, but they aren't there this weekend) Another mum sees I'm struggling and offers to do her daughters hair, she has a kind soul and heart and I am thankful someone can actually see through the façade I put up to prevent people judging me.
You see, I want to do it all, I want to have fun, take part and enjoy myself. I will my body to behave, not hurt, not be stiff, for fatigue never to happen. I don't want to feel like this.....who does? I pump my tired body with horrendous drugs, like other people who are hobbling this wonky path or RA and autoimmune diseases, with the glimmer of hope that it will beat the condition into submission and that I can lead a normal life.....whatever that is. I know people who have conditions but refuse to take the medication, which is up to them, or hold on to the prescription for weeks not getting it fulfilled, probably out of fear. The thing is you have to help yourself. Listen to the doctors who are caring for you. If you don't try the medication you won't know if it will help. If it doesn't work for whatever reason you know you have tried it and you can discuss with your doctor or medical professional what is next on the list that might help. Its all trial an error. For some the first medication helps. For others they are on a long road. I will literally try anything (apart from avocado and turmeric baths....:-) ) Tomorrow the healthcare company will deliver the 2nd anti TNF therapy I have tried. The first was on a clinical trial. A couple of years ago I took part in a clinical trial....I was desperate. In pain and at an all time low. The trial was good but came to an end. It doesn't bother me that I will have to inject myself twice a week....Once with a low dose chemotherapy drug that makes me sick and exhausted, the second with the anti TNF to hopefully kick RA's butt. My immune system is low and I'm susceptible to coughs, colds and infections, but I will do absolutely anything that means I can spend time with my family and not resting in bed or sleeping on the sofa. I want to go to the park, go shopping, go out socialising with friends, cuddle my kids before they get too old for cuddles, be a proper wife and mum. .....its not a lot to ask for, is it?
People don't understand or realise the isolation of living with a chronic illness. The frustrations, and the lows. People who you thought were friends stop calling, texting or inviting you out. We often support people around us, not putting ourselves first or even second. Always asking how others are but rarely getting a message saying "how are you?" or "I know you're struggling, can I help?", or "do you want some company?" Life moves on. I am incredibly thankful for the people I have in my life. I know I don't tell them enough that I love them and value them but they all know who they are.
I'm going to end this on a positive note.
My little Dancing Queen came 1st in her Acro Quartet. Seeing her dance, lighting up the stage with her friends made my day, made the hard work worth it and made my Mothers Day.
I write this edition wrapped up in the duvet, propped up with pillows, with a tear stained face, willing the medication to do its magic.
I woke this morning, pretty much like every morning, stiff and in considerable pain. I couldn't bare for my lovely hubby to touch me. I know he feels rejected and that makes me feel useless, a failure as a wife and a lover. He says he understands and he loves me, so at my really low points I have to cling to that and hope that its true.
Over the last couple of days I have pushed my body too far, sat on plastic seats where I really should have used my wheels, and survived off cups of tea. I used my crutches because I know space is at a premium at dance competitions. I wanted, and succeeded in supporting my daughter and her dance school at this weekend's dance festival. Moo only had 3 dances over the weekend and we could have arrived, danced and gone home, but we arrived early both days and stayed later so we could watch and support her team mates. By the second day I'm shaking, feeling sick, running hot and cold and I'm short tempered due to pain and frustration. I really should be able to support my daughter without all this shit. The night before I have taken oramorph on top on my usual concoction of pain relief.
Any dance mum will be able to relate to the rush of getting hair and make up done prior to a performance. My hands were shaking with pain and stiff with arthritis. My frustration with myself is mounting up and I know my daughter is getting nervous and her behaviour reflects that with her attitude and the climbing on me etc and I snap. I shouldn't have done, it's not her fault. She knows mum hurts, she's known nothing else, its her life....mum struggles, mums in pain, mum cant do things other mums can do. I try to hide it as there are very few mums who understand and the person I would have hoped to understand didn't. Sometimes I question friendships but its more down to the situation and people not being able to see past the end of their noses wrapped up in their own little bubble....that's fine too. (there are a couple as they battle the same struggles and its nice to know there is someone who knows exactly what its like, but they aren't there this weekend) Another mum sees I'm struggling and offers to do her daughters hair, she has a kind soul and heart and I am thankful someone can actually see through the façade I put up to prevent people judging me.
You see, I want to do it all, I want to have fun, take part and enjoy myself. I will my body to behave, not hurt, not be stiff, for fatigue never to happen. I don't want to feel like this.....who does? I pump my tired body with horrendous drugs, like other people who are hobbling this wonky path or RA and autoimmune diseases, with the glimmer of hope that it will beat the condition into submission and that I can lead a normal life.....whatever that is. I know people who have conditions but refuse to take the medication, which is up to them, or hold on to the prescription for weeks not getting it fulfilled, probably out of fear. The thing is you have to help yourself. Listen to the doctors who are caring for you. If you don't try the medication you won't know if it will help. If it doesn't work for whatever reason you know you have tried it and you can discuss with your doctor or medical professional what is next on the list that might help. Its all trial an error. For some the first medication helps. For others they are on a long road. I will literally try anything (apart from avocado and turmeric baths....:-) ) Tomorrow the healthcare company will deliver the 2nd anti TNF therapy I have tried. The first was on a clinical trial. A couple of years ago I took part in a clinical trial....I was desperate. In pain and at an all time low. The trial was good but came to an end. It doesn't bother me that I will have to inject myself twice a week....Once with a low dose chemotherapy drug that makes me sick and exhausted, the second with the anti TNF to hopefully kick RA's butt. My immune system is low and I'm susceptible to coughs, colds and infections, but I will do absolutely anything that means I can spend time with my family and not resting in bed or sleeping on the sofa. I want to go to the park, go shopping, go out socialising with friends, cuddle my kids before they get too old for cuddles, be a proper wife and mum. .....its not a lot to ask for, is it?
People don't understand or realise the isolation of living with a chronic illness. The frustrations, and the lows. People who you thought were friends stop calling, texting or inviting you out. We often support people around us, not putting ourselves first or even second. Always asking how others are but rarely getting a message saying "how are you?" or "I know you're struggling, can I help?", or "do you want some company?" Life moves on. I am incredibly thankful for the people I have in my life. I know I don't tell them enough that I love them and value them but they all know who they are.
I'm going to end this on a positive note.
My little Dancing Queen came 1st in her Acro Quartet. Seeing her dance, lighting up the stage with her friends made my day, made the hard work worth it and made my Mothers Day.
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