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Tag: support

  • Epilepsy Is Hard But My Loneliness Is Worst

    I knew my life was going to be hard when I was diagnosed with epilepsy at the age of 11 , but I didn’t realise just how hard it would actually be.

     The hardest part is watching everyone you get close to pull away and move on with their lives some with amazing careers some having families and im not saying their lives are perfect far from it but when I sit looking at my own life im still exactly where I was the day I left school but 20 years has gone and EpI have even fewer options in life left.

    … and what have I got for it … experience … pain .. loss… grief … they say you get out of life what you put in .. but there’s no way in hell I put all this in.

    I don’t need to hear that a friend of yours has epilepsy and they have a family a job etc, there are different degrees of epilepsy, I have Grand mal seizures these have two stages:

    • Tonic phase. Loss of consciousness occurs, and the muscles suddenly contract and cause me to fall down. This phase tends to last about 10 to 20 seconds, i have had head injuries, broken bones and a fear of going out.
    • Clonic phase. The muscles go into rhythmic contractions, alternately flexing and relaxing. Convulsions usually last one to two minutes or less, this can happen to me up to 50 times a day.

    Yes i am on medication, i have tried cannabis oil which has helped t a degree but not prevented my seizures, i just have to face that this is my life for ever, the pain is bad,  but the loneliness is worse, I wish I was normal but for the most part I just wish I had an understanding friend.

  • Mum Flu It Is No Joke Give Us A Medal

    The definition of Mum Flu, get out of bed and get on with things.  Reach for every available remedy, drink as many Lempsip Max’s or Benylin medicine that are allowed before driving would become impaired. No matter how much we want to be looked after, receive sympathy for our aches and pains or to curl up in bed, hide under the duvet and not appear until all ailments have gone it just is not possible.

    There was nothing better as a child when, if poorly mum (and dad) would flood you with lots of TLC. Being tucked up in bed, toast brought to your bedside a bottle of Lucosade (which I thought was medicine for many years).  Then as we progress into adult hood and are working, even a day off sick from work would mean the duvet on the sofa watching endless day time tv with a box of tissues and cups of tea on tap.

    Becoming a mum and being ill just do not go. I certainly know from experience in this house, life would come to a complete stand still if I was to take to my bed. Waking on a Monday morning feeling like I have been kicked in the chest by a horse, throat feeling like it has a thousand pins stuck in it and an ear that is throbbing so bad I could cry it just fills me with dread.  Not because I am ill, I can cope with being ill it is everything else that I have to do whilst feeling like this.  Nothing in my day-to-day life is able to suffer. Nothing can be put off for another day and the children will need fed.

    I am an organised person and so all school clothes are put out the night before, school bags at the front door at the ready but still this morning the children received my frustrations. My head is telling me it is just like any other day but my body is screaming….what are you doing woman get back to bed.  After school and nursery drop off, which signs of my current Ora was showing as a fellow mum asked if I was alright,(other words for you do look absolutely awful) it was time to get back home and start work.  Monday is Payroll day and is my busiest day of the week.  I am responsible for making sure no mistakes are made as this is my employees livelihood, they have mortgages and bills to pay.  My brain is functioning but certainly not on all cylinders. The process is slower than usual and I check and check again that all is correct. Working from home is full of advantages but on days like these is so wish I had someone to do my work for me.

    I long for the end of the day, I wish away the hours but I know I still have a few phone calls to make, school pick up, youngest swimming lessons, middle childs drama and oldests hockey training.  (once again I praise the Slow Cooker for its ability to make that part of the day easier). My partner phones a few times throughout the day only to ask have I been to the chemist to get more medicine.  There was a little hint of sympathy in his voice but he is in London and I am sure there is slight relief, one he is far enough away from the germs but also he does not need to be stand in mum until I feel better.

    Mum flu is worse than Man flu us woman are super heroes and deserve medals

     

  • Mums Committing Suicide I Finally Get It

    I get it. I finally get it. You see mums committing suicide. And I couldn’t understand it. How do you leave your kids behind like that?

    Postpartum depression is what they call it. You don’t feel like the world would be better off without you, you feel like you’d be better off without this world.

    And then everybody posts, “oh, I never knew. She didn’t say anything. She seemed okay.” ……. She told you. And it seemed small to you, you didn’t get it.

    Behind on life, can’t get anything done. Everything is expected of her and she’s drowning. She lost herself taking care of others. She’s told you, “I can’t today. I have too much to do”

    Don’t offer to help with her kids because then the guilt sets in. She won’t let you take them because she feels like she’s already not spending enough time with them. I see it. I see you. I understand you. Y’all wanna check on somebody? Stop by and visit, let her take a shower, help her in some way so she feels like she’s not so behind. Like she’s not alone. Like she’s HUMAN. There’s your signs. Stop saying you didn’t know. Because she told you.

    Photographer: Taylor LaKae Rawlings

    Speak to your GP or health visitor as soon as possible if you think you might have postnatal depression.

    With appropriate treatment and support, most women make a full recovery, although it can take time.

    Looking after a baby can be stressful and challenging for anyone, and it can be even tougher if you’re dealing with postnatal depression as well.

    There are a number of things you can try yourself to improve your symptoms and help you cope. These include:

    • talk to your partner, friends and family – try to help them understand how you’re feeling and what they can do to support you

    • don’t try to be a “supermum” – accept help from others when it’s offered and ask your loved ones if they can help look after the baby and do tasks such as housework, cooking and shopping

    • make time for yourself – try to do activities that you find relaxing and enjoyable, such as going for a walk, listening to music, reading a book or having a warm bath

    • rest when you can – although it can be difficult when you’re looking after a baby, try to sleep whenever you get the chance, follow good sleeping habits and ask your partner to help with the night-time work

    • exercise regularly – this has been shown to help boost mood in people with mild depression (read more about exercise for depression)

    • eat regular, healthy meals and don’t go for long periods without eating

    • don’t drink alcohol or take drugs , as this can make you feel worse

    Ask your health visitor about support services in your area. They may be able to put you in touch with a social worker, counsellor or local support group. It can be reassuring to meet other women who are going through something similar.

  • Be Kind To The New Mum In Your Playgroup

    When you see a new mum come into your playgroup, and she stands away from everyone because she’s new. Talk to her. Talk to her the next three times you see her, because for her, she’s come into a new environment where everyone has their own click, and she’s overwhelmed… but she’s come there to make friends because she wants to connect with other mums. She spent the morning rushing to get there, trying to look like she’s got it together and that she’s not petrified. Talk to her. Sure, she might not live in your area, go to your social events, be the same nationality whatever, but that’s the beauty of getting to know someone new.

    If that mother at mothers group keeps cancelling on you but always reschedules, keep trying, keep trying at least three more times and tell her it’ll be okay to catch up. She might be riddled with anxiety and not coping, your persistence could save her sanity and make her feel loved.

    If a mum smiles at you at the park, smile back. Talk to her, make a friend, she doesn’t have to baptise your child but now you both have someone to go to the park with. You both don’t have to feel alone on days its relentless. You both can help each other watch your kids together and it’ll feel so much easier.

    If your mum friend hasn’t been herself lately, and doesn’t want to do anything, go to her house, bring her some coffee and wine and chocolate, xanax, whatever, and tell her she’s got this, tell her she’s not alone. That not matter what motherhood throws at her, that you’ll do it together. Go do her dishes and insist, INSIST she eats pizza with you while the kids destroy the house and give her a big hug.

    All these mums might have woken up today saying I can’t do this, I have no one and I’m a failure, they might have been up all night with a restless baby, a teething toddler or whatever. They might think they are the worst mum in the world, but on a day where someone has given them some warmth, someone has given them a little encouragement and a little love, it’ll make them feel like a million bucks.

    I’ve been all of these mums in all of these occasions and some days I needed to be rescued, some days I pushed back hard, some days I hated that I felt I was the only one who wasn’t coping and all I needed was someone to reach out, and when they did, I felt like a million bucks.

    Motherhood is hard, its beautiful and rewarding, its many things, but it’s hard and heartbreaking sometimes. It’s not always a network of people helping us out, some days we are all have. Sometimes all the days we are all we have, no village, no family, no one. So make a friend, keep that play date, make those plans and keep them, introduce new mums to your friends too.

    We don’t have to compete we just have to love and tell that mother who deserves to hear it, that she’s not invisible, that’s she’s not alone, and that she is doing a wonderful job and we have her back!

    Full credit to the amazing Laura Mazza-Mum on the run, check out her Facebook page https://facebook.com/themumontherun/

  • Teach Your Children To Look After Others

    You know when you were younger and you did something real stupid because your mates told you to? And then your mum would say ‘if your mates told you to jump off a cliff would you do it? Obviously you got her point and knew you wouldn’t do anything too silly because you understood the difference between silly… and silly silly!

    Well this is my son Jacob. He is 16 and autistic. He doesn’t understand the difference between silly silly. If someone tells Jacob to do something and he thinks they will like him because of this, then Jacob does it. No matter how dangerous.

    A group of Jacobs ‘friends’ told Jacob to go and pick up a deodorant can that had been chucked into a fire. Jacob did it. He didn’t understand what would happen and everyone thought it was funny.

    The can blew up in my sons face. His head caught on fire. They all laughed. NOBODY called an ambulance. Nobody called me. NOBODY walked him home. Nobody tried to put out the fire on his head. He ran into Tesco’s holding his blistering face and ran his head under the hot tap because he didn’t know which one to use because he couldn’t see.

    NOBODY asked him if he was okay. NOBODY stopped him and asked him if he needed help. Jacob then walked home. I heard the screams as he walked up to the house.

    Teach Your Children To Look After Others
    Teach Your Children To Look After Others

    Jacob was rushed to RVI (Royal Victoria Infirmary) burns unit last night. Luckily he only has 1st degree burns to his face. His hair is singed and he has black eyes from the impact. He also has a bruise and cut to his thigh where the can hit him so hard it cut open his leg. If that had hit him in the face my son could be blind.

    I am writing this to ask you to not only remind your children of their own safety but also be considerate of those more vulnerable than themselves. Jacob got off lightly. He had a lucky escape. So did the people who encouraged him to do something so obviously silly when it is dangerous. Because if he had not been so lucky this might have had a permanent impact on everyone involved.

    Be kind. Don’t just be kind to yourself but be kind to people who need you to be kind to them. And teach your children to look after the kids that need looking after and are a bit ‘different’

    It’s an important lesson. One that we could all do with remembering.

    Please share this to raise awareness of the dangers of playing with fire and also those people in a less fortunate position than yourselves.

    Thanks to everyone that helped with Jacob last night.

    Kerry Louise

  • Best Thing I’ve Ever Heard From A Man

    Best thing ive ever heard from a man.

    “So I had been with my partner about 6/7 years and had a 5-year-old and a 1-year-old. She also had a 13-year-old from a previous relationship.

    We had no sex life, we always argued over stupid things like me not helping around the house and the kids as much. How tired she was etc etc Why should I? I work full-time.

    So in the end we split, I would go see the kids every few days then it eventually stopped. Single life had taken over. Partying, drinking, dating, Just plain old all about me.

    Then one night after about 5 months of being split up with the misses it clicked. I missed her, I missed the way she looked in the morning, the stupid little jokes, the way my tea was always ready, the way the house always smelt fresh, fresh bedding, clean pots, hugs, kiss. Everything.

    So the next day after work about half 5, I went round and then as I walked in I saw nothing had changed.. And what I mean by that is either if im there or not. Been a mother doesn’t stop. The kids were sat eating tea, while she was putting washing in and out, cleaning the pots and all while making sure the kids ate they tea.

    So to me I knew right there that the woman stood in front of me (well on the go like a mad woman) was amazing. She never stopped even when I left. I had my time to myself. Where was her time? Where was her single life? It was here. Looking after her/our kids, home and herself. While all I thought about was me.

    We didn’t get back together because I was so selfish and didn’t realise I should have appreciated everything she does for us in the now. Rather than take her for granted and lose her.

    So to everyone wondering why woman always nag for help…. sit back and look. Look at your woman and watch exactly what she does in her life because it’s certainly not looking after her. She’s last on her list. So you look after her before another man will.

    Credit Aimee Bethany Jordan Atha

  • He Cheated In The Worst Way

    Last year me and my husband  were watching Netflix when he got a call. He took it in the other room, but I could hear him and could tell he was upset. After a few minutes he came out, said he’d be right back, and left without answering my many questions.

    About an hour later he came back with my best friend.  This was odd, but I politely greeted her, thinking to myself why has he gone and collected my best friend.

    My husband told me to sit and they sat next to each other on the couch across from me, was one of the ill I thought to myself, what is going on?

    She was really uncomfortable and wasn’t making eye contact with me, and my husband couldn’t look at me. He looked passed me and told me what was wrong. He told me that he had cheated on me, and that she was pregnant, and that she had been kicked out of her house so he offered her our spare bedroom.

    She was four months pregnant and we had barely been married a year and he had already fucked another girl, if he were going to cheat he could at least of picked someone else.

    I felt sick, embarrassed, angry and betrayed, and the fact that he let her live here without asking me was too much.

    I couldn’t even bring myself to yell at him. Or throw something at him. I just cried. I cried for about ten minutes, and the my asshole husband never comforted me, or even looked at me. All he could say was “well…. sorry”. I couldn’t bring myself to kick her out so I’ve let her stay, i was basically taking care of the girl who ruined my marriage, who I used to confided in.

    In one night I lost my husband and my best friend, I was used, it is clear to me now that neither of them loved me, and you know what I no longer care, I am not angry, I am not sad I am free, my best friend actually did me a favour I didn’t have to spend a life time with a man who did not love me.

    They aren’t together anymore, my husband does see the child but only once a fortnight as he lives in a dirty house share, I however have found a rewarding career ad awaiting a huge party when my divorce is finalised.

  • Give This Boy One More Chance At Life

    On the 1st of February we got told our baby boy had a tumor in his liver. We knew nothing more till he had his biopsy on the 5th. When his results came back it was heartbreaking to listen to.. All 4 sections of his liver had been taken over and they also found it had spread to both lungs. The scan images was the hardest. Seeing this cancer taking up so much of his tiny body!!

    He got diagnosed with Hepatoblastoma stage IV. -Hepatoblastoma is a rare tumor that usually occurs in children under 3 and only about 8 children are diagnosed in the UK each year. There are stages I, II, III & IV. Unfortunately Charlie is stage IV which means it’s took over his liver and spread to both his lungs, because of this he will need a liver transplant, but they can’t do this until the cancer in both lungs goes, otherwise it will just spread again to his new liver.

    The chemotherapy treatment he’s on is to hopefully clear the cancer in his lungs and shrink the tumor in his liver. He has a scan in Leeds on 5.4.16 which will tell us how he’s responding to the chemo and how ready he might be for his liver transplant. Until then and also after his transplant he carries on with all his treatment as normal (chemotherapy, blood transfusions, platelet transfusions etc)  even though he seems happy in himself his survival rate is still only 20%-60%.

    We as parents left work to spend as much time as we can with him, but this has meant we have a really low income with hardly no financial support. I’m due to have our 2nd child on the 25.05.16 and Charlie’s 3rd birthday is on the 24.04.16 and we want to make it a very special one so money at the moment is a stress we don’t need. We are coping with what we get but as for weekends away and trips to the zoo etc in between his treatments is a struggle. The money donated isn’t for any treatment as his treatment is on the NHS it’s is literally just for him, and us as a family to make memories.**- wrote before treatment abroad was needed *****

    Charlie’s memorise is now raising for private treatment abroad to give him a chance of life. 

    For Charlie to travel to be given a second chance will cost $1.1 million.  Which is approximately£855,580.00 in UK pound. 

    Please help our baby boy live.
    X x X x X x X x X x X x X

    https://uk.gofundme.com/CharliesChapter

  • A True Gent Who Will Never Stop Fighting

    Michael was born with Transposition of the Great Vessels and had open heart surgery when he was just a tiny baby. He was doing great, living a normal full happy life. Until a few years ago, when he started having major health problems. His cardiologist said that he would need a transplant but that he wasn’t a candidate for a transplant due to being overweight. He has had many surgeries, several stents, a pacemaker/ defibrillator, av-node ablation, among several others. He coded on the operating table and died and they brought him back to life. It’s been quite the adventure.

    Michal is the most amazing father, friend, husband, brother and man in the whole world. He has always been there for anyone that needed him. From hosting toy and food drives, helping a friend in need, giving the last £5 in his pocket, giving rides, blessing bags for the homeless, fundraisers for others, he is always trying to think of a way to help others.

    Which is why it didn’t surprise me when he decided that he was going to fight this fight, and that he wouldn’t let anything stand in his way. He decided to have gastric surgery, so that he could be a candidate for transplant. Just before the surgery, one of the medicines they gave him caused his kidneys to fail and almost killed him, he had to have dialysis.

    When they took the picc line out, they didn’t apply pressure and just dressed it and left the room. A few minutes later the site burst and was spraying blood everywhere, he pushed the call light and nobody came, finally he started screaming while he was bleeding out and a cleaning lady came running in and grabbed a towel and applied pressure while screaming for help. She saved his life. Fast forward a few months. After special diets, appointments with nutritionists, battles with insurance, he finally was able to have the gastric surgery.

    Shortly after the surgery, he started fainting. He ended up being admitted to the ICU and almost died after he had a massive amount of blood loss in his stomach and went into hypovolemic shock. They saved his life again. Fast forward again, he ended up fainting again and breaking two vertebrae in his lumbar spine. Guess what? He kept fighting! Through lots and lots of hard work and a few tears, a year later he had lost close to 200 pounds and was finally a candidate!! The battle did not end though, this was just his ribbon cutting ceremony.

    There were many other battles along the way. His pacemaker battery had to be replaced, he had to have more stents, heart catheterizations, ablations, and so many procedures, surgeries, hospitalizations and doctors.

    His cardiologist found 2 doctors in Arizona that were capable of performing a transplant as complex as his (his heart is kind of backwards so they need to be not only qualified in heart transplants but also congenital birth defects of the heart). The first doctor in Tucson said absolutely not, he refused to even see him. The second doctor at Mayo said that he would be willing to do an evaluation.

    His insurance approved the first appointment…after that…let’s just say Mayo was not the easiest hospital to work with. It took over a year, countless hours of phone calls, arguments with Mayo and the Insurance company, we weren’t getting anywhere. Finally we caught a break, we were blessed with an amazing caseworker who personally knew the director of his insurance company! She was able to get things moving! He saw the doctors at Mayo and had probably 50 tests and appointments. It was finally the day we found out if they were going to approve him for the transplant list!!! Yay!!!

    We get to the appointment and the doctor says, unfortunately the doctor that was going to do the transplant has moved to a different hospital in California! They said they didn’t have anyone capable of doing his heart transplant and they denied him because he was too high of a surgical risk.

    So I suppose at this point, he could have easily given up and nobody would’ve blamed him. However if you haven’t learned by now, Michael does not give up!

    So we tracked down the doctor in California, made some changes to health insurance, and contacted his office. His nurse knew who Mike was! He must’ve made an impact somehow! So fast forward again, we had Mayo send all of the test/eval results to UC San Diego Hospital. Then we had to go to San Diego and be admitted for more testing. Finally some good news….the doctor had agreed to proceed with trying to get Michael on the transplant list!!! However, since he is in California and we are in Arizona, we’ve had to make trips monthly or bi-monthly for tests, procedures, checkups, occasionally hospitalizations and other medical stuff.

    Michael has had many other health battles in the meantime. One of them was his foot. He had MRSA and sepsis from a bad bone infection in his foot. He had to have surgery and was on IV antibiotics for several months. When that did not work and he went septic and almost died, they amputated his toe. His immune system was so weak that he has caught just about every cold and flu going around that year. It was an extremely difficult year for all of us.

    Fast forward again. Michael had gone through all of the screening and testing at UCSD (University of California San Diego). The transplant team has agreed to take Mike’s case and feel confident that they can do a successful heart transplant. They have listed him on the transplant list as of October 2017. He started as a status 2, and then his heart failure rapidly decided, and they were able to bump him to a 1b. Now we just have to wait until they can find a matching donor. This is the next challenge in the journey. Because Michael is 6’6” and blood type O-. They haven’t found anything yet that even comes close to being a good match.

    Fast forward again. Michael’s health continues to decline. He is constantly on 3 liters of oxygen and his heart is not strong enough to pump blood through his body so he faints frequently. They are worried that his heart strength is rapidly declining faster than expected and feel that the LVAD (left ventricular assist device) will be needed for him to make it to transplant. The LVAD is considered a bridge to transplant in this case. It will require open heart surgery, a pump installed on the outside of his heart with wires coming out of his stomach to a battery pack that will be worn around his waist. This pump will beat his heart for him. These batteries must be charged every 6 hours and will keep him alive until they find a matching donor heart.

    Fast forward again. Michael had the LVAD surgery. He is now dependent upon batteries and electricity to keep him alive. Unfortunately because of the anatomy of his heart, they had to put the LVAD in at an angle and it is hitting the septum in his heart. So he is constantly going into v-tach which is a very dangerous heart rhythm. The only thing they can do now is hope to find a matching donor and to have a heart transplant. We are hoping that the vtach gets better with time. It has been quite the roller coaster. He was inpatient in the hospital for 36 days, he had developed an infection from his picc line and had a rough couple of weeks. He has been discharged now and we are currently staying in an apartment right next to the hospital. There wasn’t much more they could do for him in the hospital, so now we just wait and keep a close eye on him.

    Michael’s doctor was able to bump him up to a status 1A so he is currently at the top of the waiting list in San Diego for a transplant. They are getting matches, just nothing perfect for him yet. So they are continuing to look through the offers. We are just praying for a good match now. One that will give him a long healthy life with his family and allow him to do things that he never dreamed were possible! 💜

    We hope that he can walk his baby girl down the isle someday. .

    We will not stop fighting! He deserves a long happy healthy life, just like you and I!

    Please take a look at Michael’s Facebook page

    Facebook.com/Newheartformichael

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