Sick

Not as in vomit, don’t worry – if you read this post then I’m sure you’ve had enough information on bodily fluids, I’ll try to keep it clean as I can, for now, but I can’t promise miracles, like.

No, sick as in ill. I’ve already mentioned a few times that I’m my other half’s carer, and I suppose I should elaborate a little.

My other half fell ill 2 years ago, near enough to the day. He was dizzy constantly, he fell into things, he didn’t trust himself holding our son, and after the seeing the GP, he took a few weeks off work. The doctor supposed it was stress related, which we didn’t query as his job was ridiculously stressful (he managed a pub) , 80 hour weeks, no time with his family, not enough sleep, bad diet to fit in with stupid hours etc. We didn’t think to question it, it seemed to make sense with his job.

His weeks off and days off dwindled yet the dizziness stayed. I couldn’t compute how he was dizzy ALL THE TIME. I believed him and trusted him entirely, but it just didn’t compute somehow. When people complain of dizzyness, you sit ‘em down with a glass of water and say soothy soothing things in calming tones and it passes in a few minutes, yeah? I didn’t have a bloody clue what to do, how to help at all. I just figured it would pass and we could carry on as normal again soon.

But it never did.

2 years on, and he is still dizzy 24/7 to varying degrees - from sending him flying down the stairs or to the floor in a heap when he’s completely lost his already non existent balance to just gently swaying or walking into walls and doors like a harmless drunk.

He is getting increasingly foggy, and just doesn’t seem to be here most of the time, lost in his own little bubble.

He forgets a lot of things, he couldn’t tell you for a million quid what Christmas 2010 was like, or what we did. But more importantly, he misses Bean’s milestones, eventhough he’s here all day every day, certain things just don’t register the first time Bean does something or says a new word, I show him photos and he has no idea when or where they’re from.

Since September 2011 he’s developed new symptoms at an alarming rate, from being in constant pain, to losing his temper, to tinnitus, to difficulty reading, writing, speaking and extreme fatigue.

He never goes out.

When he first fell ill he was a typical bloke, “It’s not gonna stop me,” he’d announce and he’d troop out for an hour to get his hair cut and I’d stay at home sick with worry. Every single time he returned he’d have fallen over in the high street, once he had to be helped to his feet by two policemen, with a crowd around him, laughing like he was a funny spectacle probably thinking he was some pathetic pisshead, drunk at 11am.

He’s still having tests, but his GP is less than helpful and doesn’t listen to him. We still don’t know what’s wrong. We still haven’t got a name for what this is, and we have absolutely no idea how it will impact our future. My amazingly kind mum has leant us some money for him to see someone privately next week in the hope that something might be done to answer all our questions and give this horrible illness a name for us, but if that fails, like everything else has, I really can’t imagine what we’ll do next.

I describe myself as his carer as I honestly don’t know what other term to use. I don’t have to bathe him, but I have to wash his hair as he can no longer bend down to do it himself. Or feed him, but all cooking and shopping is done by me. Or clothe him, but all washing and cleaning is dealt with by me. Along with all Bean’s needs too.

And every single day, it breaks my heart a little bit.

To watch someone you love completely, need help so badly and you can do nothing to make it better just for a second.

To watch someone young, fit and healthy deteriorate so quickly.

To feel so broken yourself and yet you still have to be strong for them.

To listen to old friends and even close family describe him as a hermit, because they Just. Don’t. Get. It.

To not being able to do anything or go anywhere as a family, and not being able to plan anything.

To have to explain to your 3 year old that Daddy isn’t well, and that Daddy can’t spin you around in circles or do roly polies with you in the garden because he’s just too poorly.

To have to say goodbye to the life you once had and worked so hard for, and never be sure if you’ll ever have that life again.

Sorry for the downer, but I can’t write about peeing in buckets all the time, can I? Don’t worry, normal filth will resume shortly.

Thanks for reading dudes, if you have any comments or thoughts, or if you’ve ever been through or are going through something similar, hit me up in the comments.

23 comments Write a comment

  1. Wow, I don’t really know what to say. It must be very difficult and incredibly frustrating for both of you. I understand your frustrations with the doctors, I was suffering dizziness, blackouts and headaches and after inconclusive tests my doc just shrugged his shoulders. I hope after going privately yous can at least come home with a ‘label’ for what your husband is experiencing and have reassurance that something can be done to help. x

  2. Thanks lovely. It’s mad isn’t it, how this sort of stuff just is pretty much ignored. The doctors and consultants that he’s seen just aren’t bothered tbh, and because the list of symptoms is so vast they think he’s making it all up! Fingers crossed we can get this all sorted soon and go from there xx

  3. You are doing an amazing job from the sound of it. You’re not super woman are you? Shh…don’t tell everyone!

    No seriously though, whatever determination, perseverance and super strength that you have, that is causing you to keep on going, grasp it tight and tell yourself that it’s all worth it. To be a mother is hard. To be a mother, a carer, a housekeeper and all of the many other things that you do to keep life for you all going, is nothing short of astonishing and it shows the love and commitment that you have. That is hard to come by in many people these days. I’m also sure that your son will understand and that your other half appreciates everything that you do.

    Dig in there girl and know that there are many people wishing you well!

  4. Hey, I used to have some awesome Supergirl pants, that counts yeah??
    Thank you for the super kind words, lovely lady. It is very exhausting, emotionally and mentally. Sometimes it gets far too much, but the only way out is through, ain’t it?

    • I think you may need to re-buy yourself some Supergirl pants. Or 7! One for every day of the week, to remind yourself of your superness!

    • You’d look awesome walking down the street, dressed like that! Would certainly give passers by, cause to stop and do a double-take. Why not!

  5. Wow, what a beautiful post. What you have to deal with on a daily basis just doesn’t compare to what I consider a bad day. Really puts things into perspective. I hope you get some answers soon and that they lead to some treatment that helps the situation.

    • Oh thank you sweetheart. It is hard, very hard, every day but the only way out is through, right? Please don’t feel you need to compare what you call a bad day to mine though, I’m sure if I was in your shoes I’d say the same :) Thank you again lovely, I will update when we get some news x

  6. Pingback: Sorry |

  7. Wow, sounds so very hard for all of you. I have had problems with my balance and tinnitus but that was labyrinthitis which left me with permanent nerve damage to my cochlear (this was nearly 7 years ago now), so a bit of hearing loss in my left ear and tinnitus all the time. I took four months off work and had a year of physiotherapy to get my balance back. It was really really hard and everything was a struggle for a long time. This sounds much harder. I do hope that you get some answers and can find a way of helping to come out the other side of this. It does sound like it might be neurological perhaps? Has your OH had an MRI scan yet?

    • Thanks so much for your comment darling. I’m sorry to hear you’ve had problems like this too. Funnily enough he was originally diagnosed with Labrynthitis (i still cant spell it after all this time!!) 18 months ago, then it was maybe Menieres Disease because the dizziness was constant and wasn’t going anywhere. He was given physio exercises to do at home to sort of teach himself how to balance again but these just made it worse. For the past year though it’s become quite obvious that this isn’t something in his ears and that something else is happening as he’s in terrible pain every day and a lot of normal things like reading and writing and even speaking sometimes are now becoming a big difficulty for him. His GP is less than sympathetic and the Ear Nose and Throat dept at the hospital no longer know what to do with him. He had an MRI early 2011 which didn’t show up anything but then again only the ear nose and throat specialist saw it, so neurological-wise I don’t know. We took the decision last month to see a neurologist privately because we had a suspicion this was in his brain rather than his ears, and thankfully the doctor he saw was lovely and she suspects it could be chronic fatigue syndrome / ME. She’s requested a referral for him to be seen by the chronic fatigue specialists at the hospital, it’s taking time though and everyday he seems to be getting worse and we don’t know what to do or how to treat anything because we don’t know what we’re treating. Plus from what I’ve read, chronic fatigue sufferers are allergic to an awful lot of painkillers and medicines so that’s another worry! Anyway, we’re just waiting for him to be seen by the ME specialists and go from there….. Thanks so much for your comment lovely, sounds silly but it’s nice to know we’re not alone in this mess and it means an awful lot :)

  8. Hello. I came across your blog purely by accident and read this post. My best friend’s husband suffered from a very similar set of symptoms as yours – he had been off work, couldn’t drive, couldn’t go out on his own and had tried every doctor and specialist he could find to get a diagnosis. Eventually (probably 3 years after his symptoms first came and after much mis- diagnosis including ME, and unnecessary spinal surgery) he was diagnosed with SCDS http://en.wikipedia.org/wiki/Superior_canal_dehiscence

    It is a rare condition and there is only one specialist in the country but after surgery he is now fully recovered – back at work, driving, etc. Apologies if your hubbie has now been diagnosed or if I’m wide of the mark – I just thought the symptoms sounded very similar. I wish you all the best.

    • Hello darling, I am so so so ridiculously grateful for this, honestly. Although it sadden s me to say, OH recently received some test results confirming that whatever this is, isn’t in his ears. So now we’re going down the scarier, more complicated and mysterious, neurological road. Thank you SO much for reading this, and I’m so glad you’re friend’s hubby is on the mend. Much love x

  9. Thank for this post. You could have been talking about my family only with roles reversed. We are 8 years down the line now and have thankfully got through all the problems surrounding diagnose and have found a course of medication that suits me so I can lead a better quality of life. There is light at the end of the tunnel, I’m proof of it. I’m grateful for reading how things are from my husbands side of things, it’s hard and I don’t always see that as much as I try. If you want to email me for any further info on fibromialgia/me then please do. Also I had to change doctors as mine was crap and told me to drink milk! My new doc had diagnosed me within two appts. I wasn’t going mad, I wasn’t depressed, it was a real illness. Ignore the non believers, you know your other half isn’t faking it and try if you can to take care of yourself. I know that takes time, money, energy you prob haven’t got right now but it’s important. And again thank you for the perspective. I’m going to show my husband in the morning xxx

  10. Thought I should just add fibromyalgia/chronic fatigue/ME are kinda all the same or at least only slightly different so don’t hesitate to ask me anything on any one of them x

  11. It breaks my heart reading this post about your OH :( what you are all going through, terrible :(

    My mum has MS, finally diagnosed about 8 years ago. She had a very similar set of symptoms. At first we were worried about a brain tumour, but no, its ms. Has anyone mentioned that with regards to your partner? XX

    • I’m sorry to hear about your mum. From what I’ve researched and heard from a friend with MS, it’s an awful disease. Glad she finally got an answer though.

      Yes, inner ear conditions are looking unlikely now, the ENT dept at the hosp have now discharged OH after basically shrugging their shoulders for over 2 years! So we move onto the even better neuro side of things, CFS, ME, MS, lupus and about half a dozen others are now looking likely… But none have been discounted officially yet *sigh* We’ll get there! Thank you for your comment lovely, it means a lot xxx

  12. I’ve just stumbled across your blog by accident. My husband and I have had similar issues. Ours started with severe back issues for OH which resulted in almost a year off work. I was pregnant at the time with 2 other children to look after. Depression then sunk its teeth into him as he could see I wasn’t coping and felt guilty I was doing it all alone. He felt as if he was no longer a man. :( anyways just as he’s getting back to normal I get a virus, then another and another. Fatigued kicked (still kicks) my arse, light and sound sensitivity, pain of all descriptions and many more symptoms. GP finally said it’s most probably fibro/cfs a year ago. I’m by no means as bad as your partner, I can most days function enough to look after my family but the bad days creep back in. I’ve found for me, that accepting what I can helps. Beating myself up over the bad days was doing more harm than good. I’ve recently read about magnesium deficiency and am trying to up my levels. I’ve given up on doctors, refused meds so far as from what I’ve read cause even more issues. I hope you all get the help and support you so desperately deserve and soon. I sympathise with both of you. X

  13. It sounds like vertigo to me. My Dad has it and sometimes it affects him pretty bad. Apologies if it’s not and this is really irrelevant! Fingers crossed for you both!

  14. Hello, I’ve just found your blog through the recommendation on Love All Blogs. I’m totally new to all this blogging and still finding my feet. I just wanted to say I really feel for you and your partner and totally understand what you are going through. I really hope that you get some answers soon as there is nothing worse than constant symptoms without a diagnosis. Its scary, its lonely and its bloody hard to make plans and do the right thing because you don’t know what the right thing is!
    I know all about dizziness as I am profoundly deaf, have constant tinnitus and suffer from vertigo. There are days when I feel ‘drunk’, find it difficult to form my words and struggle to focus my eyes. I’m also a carer to my husband who has spinal problems which affect his mobility. He very rarely leaves the house unless its with me and like your partner has gone from a very outgoing sociable person to pretty much a house hermit. He also suffers from memory problems that affect everything he does. He can literally forget something a few minutes after it has been said. Between my deafness and his memory we have some very bizarre conversations. We also have 3 kids aged 5 and under so its complete chaos in our house.
    I won’t bore you anymore with our stuff as thats what my blog is for, I just wanted you to know that I really do understand what you are going through. I think you are brilliantly funny and I wish I had your ‘voice’.
    I truly hope you get some answers soon, please let us know if you do, I’ll be following your blog, big hugs x

  15. Hey,
    I stumbled over here via BritMums. Just wondering (as your last post was a year ago) how things are with your husband/partner?
    It can be such a frustratingly slow process when you have a ‘complex medical condition’ and to be honest, the only reason I’ve been through so many hospital departments is because I had breast cancer in 2008 – they really look out for you after that! Plus I am lucky to have a wonderful GP, but it can be a nightmare when I have to go to someone else, like a locum. My nameless condition or ‘chronic pain condition’ was diagnosed as such in 2010. It’s no where near as immobilising as your partner’s. It has been link to the surgery I had in 2008 and stress (dunno what it is, it MUST be stress!!!), which I mostly agree with. It took two years to get to a manageable point again and I’m on a lot of meds. One that worked for me is Gabapentin, but there is a wide range of painkillers for neuropathic pain. It’s important you have the right support around you, not just family & friends, but decent doctors. As my pins and needles have spread up my limbs and into my face I’m waiting on an MRI via neurology, so feeling a bit nervous…
    Anyway, hoping life isn’t taking to much of a toll on you guys. Have you managed to find a good GP? Even once diagnosed, you still need to deal with GPs on a regular basis, so try as many as possible, and you are always entitled to second opinions, whether that be GPs or consultants. It can be hard to explain to people and even your own kids, like, I have oversensitivity really bad on my shins and feet and sometimes I can’t stand to be touched. You can’t really say ‘get the hell off me’ to your 7yr old. I don’t think my 12yr old can even remember when I wasn’t sore and exhausted. It takes a long, long time, but with physio, pacing, meds and whatever else you need, it gets a little better – I mean easier to live with & more manageable on more days.
    Cyber hugs – you are doing better than you think (please remind me to practice what I preach!).
    I’m looking forward to more posts! x

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