Recently I’ve been going to London. A LOT. Not for fun, but because of a neck problem I have which could eventually lead me to quadriplegia or stroke. Currently it’s just leading me to pain, exhaustion and lots of scary neurological symptoms: twitching, juddering, slurring, losing grip, extreme brain fog and my legs going from under me as and when they see fit. I also often walk/stumble like a drunken robot who’s pooped my pants on regular occasions. It’s a great look! Other times I look completely normal on the outside aside from my collar and the flicker of pain behind my smile. More and more I’m having to spend my days in bed, missing out on my children’s lives and feeling like all the previous progress I’d made in my life was for nothing.

My bed. My prison. My life.

Because my condition is a complication of another rare condition I have (EDS), worsened exponentially by an accident I had whilst on holiday with my children, the NHS are not willing to cover the very specialised tests and treatment in order to help me. This includes an upright MRI, specialist Rheumatologist opinion, specialist physiotherapy, likely more tests and eventually fusion of my spine.

I began begging my local NHS funding panel for my scan in early October. By the twentieth they had flat out refused. Even with heaps of medical studies explaining that my issues would only show up on an upright MRI, they simply stated a supine one would do. I requested a reconsideration. Sent in more evidence, even a letter from my GP stating how much I needed the scan. Rather than writing to one of the several doctors and specialists who had advised me and were well versed in my condition, they asked my neurologist for more information. My neurologist who had already stated he only knew about this condition at all because of the information I presented him with. I feel they purposely did this to slow time and make excuses not to help.

Meanwhile I fundraised. I held bake sales and tombolas. A fundraising night. I received help from local singing group New Visions and Bentley Baptist Church, even though I’m not a member! I did everything I could think of and drove myself into the ground doing so. This is why I haven’t been blogging. My body is literally broken and falling apart. I’m exhausted. Friendships have been neglected. My life has been fundraise, make calls, get carried to bed if I’m not already there. But eventually we made it! We got enough money together for my scans and the doctors appointment needed.

One of the scan images, highlighting just some of the issues with my neck.

I finally found out I wasn’t crazy! I have all sorts of issues with my neck and the doctor I saw was incredibly understanding about it. Even trying to come up with a plan of action for me. Unfortunately, that plan was all private. Apparently the NHS just doesn’t have the resources I need. Particularly the specialist physios.

Thanks to the wonderful generosity of the Bentley Baptist Church community I have been able to attend two physio appointments already. The initial one was £196 and subsequent ones are £128. Add on travel for me and a carer, plus a one night stay (in the cheapest accommodation I can find, see below picture) so I can recover from the journey, each trip is costing over £200. I use my own funds to top things up and feed myself, use the tube etc; meaning I now have enough funds left to take one more trip to see my physio. I’m also going to be fitted with a hard aspen vista neck brace on this visit which is being kindly donated to me by a wonderful member of the church who is no longer in need of it.

The quality hovels, I mean hotels, we have used to keep costs down.

After this visit though, my funds run out. I had planned to pop up another fundraising page on Facebook. Also, to do another fundraiser at the Library. But I’m so ill I don’t know how I’ll manage to prepare and attend it. Especially just over a week after my physio in London. Each trip is taking me longer and longer to recover from.

Moreover, I’ve had someone harassing me over the weekend. Despite the fact I’ve posted my hospital letters and reports. Even offered to show invoices to anyone who wants to see. They believe me to be a beggar and a scammer.

I believe it’s must be someone I know, or someone who has had a VERY good snoop into my life. But they’ve hidden their name and commented on my blog, (see Dear Mother post: no I do not think it’s her) my blog I’ve not been well enough to write since September. Apparently my children shouldn’t have had Christmas presents. I shouldn’t be going on a free, once in a lifetime holiday with them; after our years of stress and turmoil. I’m a liar and because I have family who can do that for us then there’s no way I’m ‘poor’. What does my families financial situation have to do with my own? I cannot expect them to bankroll my health needs! Yes, I’ve replied to each comment. But not because I’m a cheat or a scammer. Just because I’m sick of this ableist point of view. The idea that people who are ill or disabled do not deserve a life. We don’t work, so happiness should not be on the table for us. Going out to the park or with our families is wrong, despite the amount of effort it takes and pain it causes. Because we should remain out of sight and out of mind.

Life is difficult enough without me grabbing the slightly better days with both hands and holding on with dear life. It kills me when I’m up more and do more. But I love it. Because I’m living rather than just exhausting for a while.

So now I’m at a loss. Do I make this physio my last and just try my best to cope with the collar? Do I fight on? Do I still set up my fundraising page and open myself up to more abuse and stress that I just don’t need? Do I run myself further into the ground organising more fundraisers I just don’t have the energy to do justice?

I don’t know. I just do not know what’s for the best anymore.

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14 thoughts on “What to do?

    1. Oh hello there, thanks for the reminder. I was going to do a blog piece on how I coped those few nights. Thanks for the reminder! Though kinda creepy you’ve decided to nosey at my husband. Not just me. The stag do was his brothers. Most of the family went. He declined and so they paid for him. I mean, if you don’t deserve a break after basically being at work 24/7 for the last 3 years. When do you?

      Did you hear we are going to Disney too? Also paid for by my husbands family. I can’t go on the rides (well except things like small world). But I’m damn sure gonna do my best to be up and about as much as I physically can. I’ve got a scooter ready and waiting and I’m going to make the most of my time with family before a very dangerous surgery.

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    2. Does it matter if someone else did pay? I’m struggling to understand this statement/question. Where are you going with this? If you don’t believe jen has problems that’s fine. If you don’t believe she needs to raise money that’s also fine. If you don’t think she’s legit that’s fine too. Don’t look. Don’t share. Don’t argue. Be the bigger person. As right now you look a bully and a fool. You don’t have to agree with anything but you shouldn’t judge either. While I’m sure you are perfect in your own mind, what you are doing and showing yourself to be is far from it. Leave her alone. If people want to help herb they will. If some don’t they won’t. You clearly have a huge issue with this. So confront it. Properly, say why, ignore the posts. Don’t hide and make passive aggressive comments. It is achieving little.

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  1. I’m Jennies husband and I’d appreciate it if you could show my wife a bit of respect. You know nothing of the hell she has to go through every day. Yes I went away for a few days completely paid for by my parents as money is tight which has nothing to do with you anyway. I think the best thing you can do is crawl back under the rock you came from you slimy little fuck. I’m guessing you’re single as no fucker would want a heartless bitch as a partner. Thank you and goodbye. If you have a problem please feel free to message me on Facebook and we can discuss further.

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  2. Thank you for giving away who you are. Rather than just tell me you decide to try and hide but you obviously are too stupid to not give yourself away.

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  3. You know who I am? Please tough guy go on and name me here. Let’s do it. Do you have the bollocks for it?

    You haven’t a clue who I am.

    After thinking about it I have more problem with you than your wife. She may exaggerate and has more ability to do things and go places than she tells her followers and she believes everything she reads online about condition may not have, but her intentions are probably good. But you are LAZY. Get a job, hire help and pay for her health needs. That’s what a husband does.

    Do you feel the slightest bit of shame taking advantage of your wife’s illness by sitting on the sofa, staring at your mobile and watching footy? Mate take care of your messy home, clean, cook meals and don’t treat her like shite. Hows about that?

    And whats so hard about your life? You drive a child to school? Help them dress? You don’t get am award for that. Wait you’re getting an expensive award, a free holiday to Disney that you did not earn and that is after a holiday to Spain also paid for by others. And why is money tight? BECAUSE YOU WON’T WORK!

    Be a man and take care of your family. Set an example for your children. You should be ashamed, you Trump loving idiot.

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    1. Hey there nosey neighbour! Just so you’re aware if you bothered reading slightly further on my Facebook page you would see my scan report, diagnosis from a rheumatologist (one of the best), neurologist (same) and expert physio. By expert I mean renowned as one of the, you’ve guessed it, best in the business. You’re also aware I have a Stoma, Dysautonomia, ehlers danlos, POTS (which I could explain but clearly it will go over your head) and other issues that I can’t be bothered to go over again.

      My ‘ability to do more things and go places’. Yesterday I went shopping. I set off on my own (as I was watched doing). Then I pulled up at my friends house as I cannot go any distance alone. She came with. Sat me down. Helped me dress and undress if needed. Did all the running around and held me up when I struggled to walk. Over an hour of that was sat in a cafe as I needed to conserve energy.

      Today? Well I just woke. In crippling pain. Because yesterday I actually moved more than the HALF AN HOUR my physio recommended I be upright. Well, that was increasing in ten percent increments. So maybe an hour now.

      I went to Durham with my husband. Why? Because leaving me home alone with the kids wasn’t an option last week. So I went. And it hurt. But I made the most of it. Because I deserve time with my family just like anyone else does.

      I’ve done slimming world, to try get in the best place for surgery. THEY look after me. Often my daughter comes so I can hold her as I walk in as from where I park to the door is a bit much. I watch her at gymnastics. The other parents reserve me a seat as I can’t stand for long.

      You think you know so much of our lives. But you can’t see in our bedroom. You may hear rows; but living with this all is INCREDIBLY stressful. My husband is exhausted? Why?? From his wife (me, in case you don’t get the third person) writhing in pain all night even after all her meds. From being woken several times to help her get to the bathroom because at night she can’t have her heart meds. From his son waking terrified thanks to incredibly noisy neighbours not only playing loud music, but also war games and screaming along.

      He cooks, he cleans, hoovers, steams floors, cleans carpets, tidied away kids clothes and does pretty much everything a single parent would. He also picks up meds, drops in prescriptions, changes Stoma bags, cleans up when they explode, bathes his wife, carries her in and out of the shower when there’s no collar and her legs don’t work properly. Plus so much more.

      But you can’t see that through brick walls. Or snippets heard through them. But thanks though. Plenty here with this and the last post I trashed to go to the police with.

      PS I don’t exaggerate my illnesses. If anything I under play them. But believe it or not, disabled people are allowed to leave the house. I know it’s shocking. But sometimes a few hours pleasure is worth days of pain.

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      1. 1. Your husband lazy. The things you list that he does most people do ON TOP OF A JOB. One more time- LAZY.

        2. He’s rude and mean to you and others.

        3. He is untrustworthy and you know that.

        4. I live nowhere near you. But rows in the bedroom? How interesting.

        5. The police don’t arrest people who express their observations and opinions on the Internet.

        After reading all this love, it sounds like your husband is an abusive man which is concerning. Please put your safety and the safety of your children first. A man who shouts at his wife who is so disabled is not a real man.

        Though I wonder about one thing. Why do you explain every detail of your life to a stranger on the Internet? What do you care? If you’re doing the right thing and not lying or exaggerating, delete and move on. You have the power to delete any comments on your blog but you choose engage.

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      2. You are done and yet there was one more comment.

        Do yourself a favor and stop arguing needlessly on the Internet and spend time with your children instead. You mention in previous blogs that you don’t get enough time with them because you are ill. Here’s your chance. Go on and be with them.

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  4. I just wanted to say Hi! I came across your blog because I too struggle with invisible illnesses (RA, CFS, scoliosis, osteoporosis, chronic kidney stones, vertigo) not as severe as yours, but severe enough to have a huge impact on how much I actually can “live” my life. I’m a mom as well, and I struggle so much with horrible fatigue, back pain, joint pain, and all the anxiety/depression that comes with it. I was actually googling how to deal with jealousy over people who have their health. Especially when it comes to parenting. On the days that I can get out and take my daughter to the park, I should be happy and enjoying it, but just looking around at the other moms and feeling jealous, imagining how much better it must be for them and their kids… I know how sad right, but you can relate. Plus, I always feel so judged. The other moms always seem so much more put together and interactive with their kids. I’m standing there barely making it, looking like I haven’t showered in days, leaning on the swing set trying to keep standing there pushing her so she gets to play too. Anyway, I wanted you to know that you’re not alone in how you feel. No one would choose this life, but here we are.

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    1. Thank you for your comment. Just so you know, your kids will grow up knowing how much extra effort you put in to be there for them. They will know you have them every ounce of yourself you possibly could and they will always love you for that.

      Liked by 1 person

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