Support not sympathy.

[1DesperateDad]

Hi ladies, I thought I'd join you although I'm a single dad & as my mum used to say 'Mums know best.' Hope you don't mind.
My name is Steve & as I said I'm a single dad bringing up a 13yr old daughter. I've had her since she was 12 weeks old & she was born suffering from opiate withdrawal (I guess you can figure out why). I took her from her mother at this age for obvious reasons. I have never been an addict but I understand that addiction is an illness rather than a lifestyle choice. But I'm not here to talk about the past.
I suffer from a condition called Cluster Headaches (I know there is a section for them on here so I'll post what I know about them on there later). The reason I'm posting here is I'm getting to the end of my tether. The condition I suffer from has been recognised as the most painful condition known to medicine & without seeming dramatic I'm finding it really difficult to cope at the moment. I get between 3 & 7 headaches per day & the recovery time between them leaves me beaten up & almost incapable to carry on with normal life.
I moved a couple of years ago & was very lucky to get a mutual exchange to a beautiful house in a lovely area. My primary reason for the move was because my daughter is very intelligent (not sure what gene pool that came from) & the schools in the area are the best. My life is a right-off but she stands a chance of becoming something really special & succeeding in life.
I can't hold down even a part time job due to the unpredictability of when the next attack will happen. This gets me down so I try to help others in the community (I'm no saint so please, no sympathy) by helping out others where I can with the skills I have. I help people fix their computers, suggest that people share their broadband with their neighbours if they cannot afford their own & share the costs.
As a single dad my daughter suffers. She rarely gets invited to parties & in the just over two years we have lived here only twice have her school friends been allowed to have a sleep over here & they get picked up 1st thing in the morning. I understand this although it hurts. I don't drive due to my condition but Immy (that's her name) does have a social life. I encourage her to accept every offer of going to friends houses but we live in the middle of nowhere & you can hear the distain in parents voices 'Oh so you don't drive' whilst they're sat in their X5's.
It costs me £20 to get to the doctors & back every two weeks to collect my prescriptions because the chemist does have a delivery service but only for people in & around the local town & I live 6 miles away.
I have an excellent support network on a Facebook group for CH (Cluster Headaches) but I came to you because this isn't about me it's about Immy. I don't want her to suffer because of my condition & without sounding like a drama dad, she's what keeps me going. She's the reason I'm still alive because I'm all she has & with no light at the end of the tunnel for me, what the point of carrying on when you're too scared to go to sleep at a reasonable time because you know at 1am you're gonna wake up in agony.
I'm not quite sure what I'm asking for but I really need help (& mums know best).
My daughter was offered to go to both Poland & Sicily, as an ambassador for the school, all expenses paid as part of a sustainability project with 6 other schools from different countries. Unfortunately because I got an emergency protection order when I 1st took her away from her mum a clause was put in place where neither parent could take her out of the country without the others permission. This was back in 2002, before records were digitised so after many costly manual searches to find the original residence order documents & then the cost of getting copies of the originals signed by a judge (£10 for the doc but £60 for a judge to sign them) & getting the relevant orders to remove the passport ban & her mothers parental responsibility removed, it was too late for her to attend the trips. I don't need to explain how that one felt.
I get ESA & am trying to gather enough evidence to apply for a PIP. I try to make a little on the side by refurbing old laptops & try to save that money to cover school trips etc. I can only buy her school uniform from school togs (no Asda 2 for £5 blouses for us), hers are £16.95 each, all her uniform has to come from there apart from socks & tights but it's worth the sacrifice because the school is so good & she excels in pretty much every subject.
I'm starting to waffle on now (I guess I needed to get this off my chest & you ladies are good listeners) & as I said I don't quite know what I'm asking or looking for but mums know best so maybe you lovelies can figure out what will help this desperate dad who loves his daughter so much it hurts & she is so supportive of my condition.

Thank you for taking the time to read this.

Steve x

Hi mate

sounds like a tough one. Your DD (darling daughter on here) sounds great and you sound like a fantastic dad.

I am sure you have already had every investigation going for your headaches. I think chronic pain can make life feel intolerable.

Is there really nothing else they can do to help with that? Because I think if that was taken out of the equation everything else would miraculously get a lot easier.

Hi Steve , your situation does sound tricky . Cluster headaches sound absolutely awful , I get migraines but I hear cluster headaches area completely different ballgame .

Have you any family support ? Or friends ? Anyone who could come to your house if your daughter wanted to invite some friends over just in case you became unwell ?

I'm sorry I don't have much useful advice. I'm sure your daughter appreciates everything you do for her though.

Hi Steve
I don't have any useful advise to other. But you sound like a fantastic dad. Your CD is very lucky.

Try young carers groups and support near you.
She is doing great and that is credit to you.
Now you sorted the passport etc there will be another opportunity to travel for her so look ahead.

Believe it or not. It's not my condition that prevents sleepovers. It's the fact I'm a single dad with a teenaged daughter, on benefits but living in a well off area.

The nearest support groups are either Worcester or Hereford. It's too far to travel regularly & there's no public transport within 3 miles. I have family but they live far away & I wanted to bring Imogen up in the country. We don't need to lock our doors or close our windows at night or if we go out. There's been only 1 crime (fuel theft from a farm) in the last two years.

Thank you all for you kind words. It helps loads. I knew my mum was right when she said 'Mums know best'

xx

Keep posting - there's all sorts of topics - I'm a single parent too and it can really help just for a bit of back up when you feel totally alone.

Welcome to MN x

Thanks Sophie. It's reassuring when you know you're not alone.

young carers may be able to help with transport to support your dd.

keep talking to her school it sounds like they recognize her abilities and I am sure there may be more access to support and help if you ask.

don't assume as to why no sleepovers, not everyone is having sleepovers all the time...keep doing stuff in the community and people will accept you.

and if you cant drive coz of medical reasons well that's life. can you or your daughter cycle?

Hello, as this is an absolutely public forum can I gently suggest that you report your own posts and ask mn to change your names to fictitious ones? That way the privacy of your dd is protected.

I can offer support around claiming pip and imagine you should qualify. The sooner you apply the better because if awarded, and it takes months, the payment is backdated to the date of your first phone call to ask for the forms. Once you get PIP you may well find you qualify for additional help such as a free bus or train pass. I'm London there is also a Taxicard scheme helping with the cost of taxis. Definitely worth investigating.

I agree with the Young Carers angle. They may well have some support for those in rural areas. Are school fully aware? They may also be able to assist more if so. Agree, too about becoming well known and active in your community to avert fears though I guess being a single dad may just leave some uneasy about sleepovers. Invite the X5drivers in for a cup of tea and show them how normal you are and frankly, why do they need to know you are on benefits?

Best wishes, I hope things improve for you.

Hi Redannnie, I've suffered since I was 18 (am 44 now) with episodal CH. They went chronic about 4-5 yrs ago. I've kept the trigger, diet diaries etc. Tried cutting out processed foods, caffeine etc. Through the years as they come up with different things I've pretty much tried them all. Verapamil, Topiramate, Lithium etc. I use O2 hi-flo 10l/min & have Sumatriptan tabs, Imigran injections & Zomig nasal sprays. I dismissed my last neuro because she said I obviously knew more about them than her & then she spent the next 15 mins reading up to check I was telling the truth. She then said, 'Well the meds you are on are obviously not working so I suggest stopping them all & take up jogging.' My original neuro has taken me back on even though I no longer live in his catchment area.
As you know the nighttime attack is the worst & when you're too scared to sleep because you know at 1am you're gonna wake up with it in full swing, there's little you can do. Now I stay up until that one starts & reach for the oxygen. I know within minutes what I need to take next & have lost count of the times I've woken up on the concrete floor of my out house with a lump on my head where I've been banging my head to try & move the pain elsewhere.
I taught myself hypnosis to try & gain control over the pain & sometimes it works. My neuro says I'm years away for the Brain stimulation op unless I can fund it myself so I just carry on. Imogen keeps me going because she needs me & she knows that when dad's having a headache the best thing she can do is get me a cold flannel & put her headphones on. I've explained it to her that it's a bit like stubbing your toe. It hurts like hell but it's not causing any damage & I'm in no danger & it won't hurt for too long.

Thanks for the support x

MatildaTheCat, have messaged you but thank you for the advice, & please don't worry about being gentle. The saying goes 'Behind every great man is an even greater woman'. Well the reason for that is us blokes need a good kick from behind every now & again.

Steve :) x

It looks like you have tried all sorts from the doctor. Have you considered seeing a herbalist? A consultation with a qualified herbalist can often sort out chronic problems that orthodox medical practitioners have no joy with. It wouldn't be cheap, but might be worth considering.

Hia, I've tried them all. From acupuncture, bach flower remedies & various herbalists. I have a friend who sends me a bottle of a certain oil (can't mention its name on here) that is diluted with hemp oil. I take one or two drops under the tongue & it helps to take the sharp edges away from the pain sometimes. I do some consulting at various small festivals so know quite a few healers. Will pm you with some things that have helped.

Thanks x

Hi again & thanks for the advice. I've reported the post as you suggested & wrote the following:

Hi I have just joined & several of your members have kindly suggested I report my post to you so I can remain anonymous. They've explained why (due to these being public posts & people can identify me or my daughter by the information I've written. Being new to the site I didn't realise this so could you help me out please?
Many thanks