Hi everyone. Well today we have a special interview the person you all know from my blog as “Hubby”, AKA The Raspberry (@raspberrytalk). Hopefully it will give you all a little insight into how he feels about things and is dealing with what is happening.
We’ll also be hearing from my alter ego, Samantha, Raspberry’s wife and full time carer. We’ll take a look at some of her inner thoughts and fears.
Hopefully it will make you laugh and cry but, most of all, let you know that you’re not alone; not the only one that is scared and that it’s ok to be worried – as a carer or caree – and its ok to have doubts.
These are the things that push us to keep going. Remember - Without darkness, we can’t appreciate the light.
So let’s jump straight in:-
Where did the nickname raspberry come from?
Ah yes, that is courtesy of my older brother. Long story short; my wife and I were taken to dinner by my brother and sister-in-law, along with my mum and father-in-law and a friend of my brother. Their friend, my mum and me all use walking sticks and my brother jokingly said “oh god, we’re taking all the raspberries out”. I had no idea what he meant until he explained:-
“Raspberry Ripple = Cripple”.
I thought it was hilarious and so I nicked it. Some people find it offensive, but hey, I’m the one with the stick, so bugger off! :-) lol
So Samantha, what do you think of your husband’s new nickname?
Like my husband I find it very funny. Also you have to understand when Raspberry’s brother said it, it was said with humour and I also think it’s his way of dealing with it.
What health problems/conditions do you have?
Well, how long have you got? Hehehe.
Ok, I’ll try to keep it brief and just summarise. I’ll start at the top and work down.
- A 23 year headache. Seriously! I’ve had a constant pain in my head, usually near the back, but often like a gentle vice grip on the top of my head. It moves around, but it is every … single … day! :-( I generally ignore it as I’ve become used to it over the years.
- Several displaced vertebrae in my neck.
- Dehydrated muscles in my neck and left shoulder.
- Cervical Spondylosis (coupled with the above this also causes numbness of left arm with painful tingling in extremities of both arms).
- Osteoarthritis and limited mobility in left foot caused by my left foot being shattered in a motorcycle accident in 1994. The side of the foot was also torn off (replaced with a large skin graft from my thigh) and the big toe partially severed.
- The above causes me constant severe pain and my knees often buckle causing me to fall. I also have a neurological problem that makes my head think the floor is the wall and causes me to fall backwards without warning.
- On top of all that (or maybe because of it!) I suffer from Anxiety, Depression, Chronic Insomnia, Agoraphobia and get really bad panic attacks, mood swings and weird attacks that leave me hyperventilating, drenched in cold sweat, heart pounding, vision blurred, dizzy, disorientated and unable to move or speak properly (these are not the panic attacks. These are different).
- Since May(ish) 2012 I have also been having Non-Epileptic Seizures on a regular basis.
I recently did a sleep study at Papworth Hospital in Cambridge. I’m normally awake most nights until 3 or 4 and when sleeping I normally wake several times throughout the night.
So of course at the clinic I fell asleep in 8 minutes and had the best nights sleep I’ve had in ages. Typical!!
BUT - I seem to have stumped the doctor and will be invited back for further study. I appear to have some symptoms of narcolepsy, but some that completely contradict a diagnosis of narcolepsy.
I slept without waking for 6 1/2hrs ... but never once reached REM/dream sleep (the human brain usually runs on a 40 minute-ish sleep cycle - light sleep, deep sleep, dream sleep and round again every 40 minutes or so).
The nest day they did nap tests throughout the day. I had to lie down and try to relax/fall asleep for 20 minutes or so. I jumped light and deep sleep and went straight to dream sleep all 4 times - without even realising I was asleep!!!
Apparently this is not right :-)
Anyway, the doc was very interested and wants to do some follow ups. Hopefully this will start to pull some threads together.
I know all of that sounds like a lot when it’s written down, but I have a hell of a lot less going on than some people, so I’m grateful for that.
Samantha, do you have any health problems of your own?
Yes, but not as many as Raspberry. I also suffer with depression, so I can completely understand what he’s going through. I’ve had anxiety issues, so I can also understand that. I even sometimes give hubby advice on how to deal with certain situations.
I have Migraines which I’ve been told by a neurologist are stress induced migraines.
If you read the following blog entry it will tell you a bit more about my health problems:-
Raspberry, when did you first notice signs of your health declining?
That’s a difficult one. Obviously I did a lot of damage to myself when younger from motorbike crashes, etc, so pain has been a part of my life for over 2 decades. Like most people I’ve had issues with stress, depression and anxiety issues off and on over the years – I even lost my job in 2003. I had a sort of mini breakdown in the office, threw everything off my desk and ran out of the building screaming and crying.
I never went back and was “made redundant” (my manager swung it with the upper levels) in 2004.
But the rest has sort of snuck up on me since then. I started to need help to get up stairs as my knees kept swelling up and getting in/out of chairs was murder on my back. I’ve always had pain in my foot and neck since the crashes, but it was getting worse and worse. I was in pain everywhere, suffering fibro fog and was popping pain killers like Smarties just to keep functioning!
But it wasn’t until all the muscles in my neck seized for a week that my wife forced me to go to our doctor.
Samantha, when did you first notice signs of your husbands health declining?
I personally noticed subtle changes as far back as 2002, just in the way he acted, didn’t seem to enjoy his work anymore and seemed like the life had been kicked out of him. As the years have passed I’ve noticed him complaining of having a bad back all the time, his neck hurting, shoulders and his knees.
You have to understand that I’ve been with my husband for a long time now (17 years in July!), so I did notice subtle changes in him as a person as well. I noticed him popping down painkillers like sweets, even though he thinks I didn’t know. I could see he was hurting long before he would admit it to anyone … even himself!
Raspberry, you say you have ME and FMS. Aren’t these “in your head”?
Some very ignorant and silly people believe this, yes – like that nutter who advises the government and says things like Gulf War Syndrome doesn’t exist.
But talk to any real doctor and they’ll tell you they are both very real. ME is certainly Neurological, not Psychological and both ME and FMS have very Physical effects. The government’s crazy idea that Cognitive Behavioural Therapy will make it go away just shows you how out of touch and clueless these people are. “Yes, you’re in agonising pain, but try to think more positively about it and it will go away”. WTF!?
Yes, both ME and FMS have psychological components, like “Fibro Fog”, etc, and every chronic disorder will leave their victims with depression and anxiety; but that’s not the be all and end all of the condition, that’s just yet another symptom.
When my muscles are screaming and my joints are swollen, how can anyone say that’s in my head or that it will all go away if I think more positively about it!?
So, Samantha, what is your opinion on ME and FMS?
I believe they are real and not just in someone’s head. For example, as I’m doing this, my husband is in bed because his body and mind are so exhausted he simply can’t keep awake. Also the amount of pain I’ve seen him in, it’s actually emotionally painful for me to see. My husband has a very high pain threshold, so for him to be so fed up of pain and nearly in tears because the pain is that unbearable, even with painkillers, it’s got to be real.
I personally think more research needs to be done world wide into both of these conditions.
Do you feel like you have support from the medical professionals?
Well, it took my GP seven months before she said “oh, that shaking is still going on is it?”, so that should give you some idea.
The Pain Clinic I was referred to discharged me after I had a seizure during acupuncture and ended up in A&E. They said anything else they could try would probably cause me more seizures and they weren’t willing to take the risk.
My Neurologist gave up after seeing me twice (and I had to badger my GP and the Neurologist directly to get a second appointment). She referred me to the specialist ME/CFS Clinic.
After meeting me for less than 5 minutes they stated that they were not willing to help me because “we’re not trained to deal with people with your level of anxiety”. WTF!!??
I was referred to a physiotherapist and it took over a year to get an appointment. After 20 minutes of me explaining everything that has ever happened to me, the physio said there was not much she can do for me and I should just try to keep doing the little bits of exercise I manage to do now. Then she said I could go … and I promptly keeled over on my way out of the therapy unit as my legs buckled under me :-)
Finally I’ve been sent to a psychiatrist because it’s obviously all in my head. She listened to me for nearly 2 hours. She sent an initial report to my GP and copied it to me … half the information was incorrect.
But she did refer me to the sleep clinic and that seems to be pulling some of the threads together. So I’m hoping this will bear some fruit.
What about you Samantha - Do you feel like your husband has had support from the medical professionals?
I would say no. I actually think it’s disgusting how my husband has been kicked from pillar to post. I am going to contact PALS about how the so called specialists have only seen him once and decided to refer him to another one and then another.
This is basically what happened for most of last year. Even the so-called specialist ME/CFS Clinic wouldn’t help him, because of his mental health problems – caused by his ME!
This is basically what happened for most of last year. Even the so-called specialist ME/CFS Clinic wouldn’t help him, because of his mental health problems – caused by his ME!
How supportive have your family been?
They’re really great. My parents live at far ends of the country, but we talk on the phone and via Skype and emails. It’s not all about physically being there to help.
People under estimate how important emotional support is. My parents and their partners are always there for both of us whenever we need to talk. I get depressed and have suicidal thoughts; I struggle most days to see any kind of light at the end of a never ending tunnel of pain. And then there’s the stress and anxiety caused by the DWP about my ESA, DLA, Sam’s Carer’s Allowance. It’s never ending and I really just feel that it would be better for everyone if I just disappeared.
But Mum and Dad pull me out of it time and again. We don’t always talk about anything specific - just talking to them about what’s going on today, or how bad my Dad’s internet connection is, makes me keep pushing onwards.
But they’ve also both helped us out when we’ve been struggling with money for food and other things too.
I can honestly tell you here and now that if I didn’t have my wife, I’d be dead. If I didn’t have my Mum and Dad, I’d be dead. If I didn’t have my brothers – even though one of them is in Canada – I’d be dead.
I’m really lucky to have them all and I know so many people online that either have nobody or their families simply don’t understand or even believe they’re ill. My heart goes out to all of those people, because I know I couldn’t cope without my family.
What about you, Samantha?
My family are not around and haven’t been in contact with me for a few years now, so I have no support from them at all. I’ve tried writing and ringing the numbers I have for them, but never with any answer.
However, I have an amazing mother-in-law who has been very supportive. We have a really good relationship, so I find it easy to talk to her if I need to. The trouble with me though is I will listen to everybody else’s problems, but don’t like to talk about my problems if I need to.
My father-in-law is the same really; very easy to talk to and both his partner and my mother in-law’s partner are also there for us.
I worry that they all think they are not helping, but just knowing they are there if we need them, even just to talk, makes such a difference.
When my husband had his lumbar puncture appointment his mother and partner came down and drove us to the appointment. And when that appointment was re-scheduled after we waited for 3 hours (!), they stayed with us for an extra week. They also helped us buy a replacement car (!), one that’s better for hubby and small enough for me to learn to drive in.
My father in-law has bailed us out at the bank when our benefits have been late and we need to pay gas/electric bills, he replaced our laptop so we can stay in touch with people online and he has also offered to pay for my driving lessons when I start them.
Our friend T as also helped with driving us to appointments and just coming over to see us, which is a great help to us both. He’s been a really good friend and also given me some good advice.
I also can’t forget my husband. Even though he’s the one who’s ill, he’s always been there for me. He will hate me saying it, but he really is a special person.
To my husband’s family, our friend T and my husband, I would like to let you all know I love you all and am thankful to know you all. To anyone I’ve forgotten - sorry! :-)
How has your declining health affected your life? How different is your life from say, 5 years ago?
I know it sounds like a cliché, but it’s turned our lives upside down.
It’s not the days when I’m in such extreme pain I can’t get out of bed, or my body is so exhausted and my mind I so tired I can barely move. It’s the days when I feel not too bad that are worse.
On those days I can almost convince myself that my life will suddenly go back to normal … then I’ll probably fall over for one of the million reasons I go down; a dizzy spell, that weird neurological thing I have, my back giving out, my knees giving out, my ME causing my muscles to just stop working or something just really boring like the side effects of my pills (all of which cause “dizziness”).
These are the only days I get the chance to go out of the house … and of course that’s when we get the funny looks from everyone. “A 40 year old, with a stick? A disabled Blue Badge for one stick? You don’t look disabled, you are obviously one of those shirkers and scroungers that the system is “rife” with!”, (ah yes, the MASSIVE 0.8% of the entire benefit system!).
5 years ago I was a successful wedding, fashion and lifestyle photographer. I’d do shoots in all sorts of locations, organise and sometimes entertain hundreds of people, shoot models in the street – and I mean busy places like London – or on busy beaches like in Egypt!
I’d run studio photoshoots with loads of people; models, artistic directors, makeup artists. I’d be running around all day long lugging gear, setting up lights, climbing ladders or crawling around on floors – whatever it took to get the shot.
Now the thought of going outside gives me panic attacks. If there are more than 5 people in a room I’ll start to freak, hyperventilating and panicking. I jump when there’s a knock on the door and I’m terrified of the phone. My wife takes 20 minutes to calm me down just so we can go to the doctor’s office!
And when we do go out I can barely make it from the car to whatever shop we’re going to and then I have to get in the dreaded wheelchair and be pushed around like an invalid … you may have noticed I hate my wheelchair :-)
If I exert myself too much one day, I’ll be paying for it not just the next day, but also the two day after that as well. I’ll go from getting 3hrs sleep one night to sleeping 14hrs straight a few days later.
I do often wonder why I even bother; it’s not really the kind of life I would wish on my worst enemy.
It’s really soul destroying when I’m feeling great and say “I’m just popping upstairs” and only make it half way before collapsing and having a seizure while I slowly slide back down the steps and my wife desperately tries to stop me smacking my head and get me up the stairs to the bed (she’s a slim 5’3”. I’m 5’8” and weight over 16st!!).
And the most depressing thing? This is the good stuff! I’m 41 this year and I’m just at the beginning of all this. The problems are just going to get worse and worse from here. I honestly don’t think I could live with another 30 years of this.
How do you feel about someone else having to take care of you?
Look at my last answer. How would you feel about it? How can I expect my wife to deal with all of this when I can barely deal with it myself? Why should she have to give up her life? She’s not a trained carer or healthcare professional.
And for myself, I hate having to be reliant on someone else. I used to ride motorbikes and jump out of aeroplanes. As a teen I played rugby, weight trained and did martial arts and as a designer I used to control construction teams and be responsible for multi-million pound contracts. I’ve always thought of myself as mentally strong … even though the exercise slipped and the love of great food took hold, hence the 16st :-) … so having to ask for help for anything is really difficult. I feel like it makes me something less in the eyes of those I love.
My Dad is 70 this year. He’s got his health problems, but even though he’s 30 years older than me, he’d run rings around me.
His Mum, my Grandma Jeanie, is 92 this year! She still looks after kids after school, runs around all over the place and on the rare occasions we get to see her, she’s the one that runs about making us tea, coffee, food, etc.
Having to be looked after by other people, especially at my age and with my background, is depressing and totally demoralising.
Samantha how is being a carer affecting you and your relationship with your husband?
Good question and it’s a hard one to answer … but I will try my best, so here goes.
My husband and I have always had a very close relationship and are very much in love … soppy I know, but it’s true.
But even with our relationship being so strong, caring for him can have a strain on it. I know he resents the fact that he needs help and I sometimes wish he were back to his normal self before he got ill. Since my husband has become ill he has changed as a person and this is the thing I find most difficult to deal with. I do get glimpses of the man I fell in love with and that is one of the main reasons I stay.
We still have a romantic relationship, but it is different. I can’t explain it, but it’s just different. I don’t know if that’s how it is for my husband, but that’s how it is for me.
Some days it’s like living with a friend rather than a husband, especially when he is having an extremely bad day. Sometimes I think maybe I should not be his carer because I am so protective of him and so close to him. But on the other hand, maybe I am the best person to take care of him because I know him so well and I do and will notice changes in him. This is not to say that some days I don’t just want to walk away and not come back. I think it’s quite natural for anyone forced into this sort of situation to feel like that.
But it also felt almost natural for me to become my husband’s carer. I’m told I have a caring nature to me anyway, but I never thought I would end up being an actual carer. Being a carer has affected me in so many ways; some good and some are bad.
It has shown me that I am a strong person and I am capable of dealing with certain situations, like when my husband is having a seizure. Sometimes when I read through my blog, I almost forget it’s me and think “how does that poor woman cope with all that going on?” and then realize it’s me!
But on a more negative note, my husband’s health and the fact that I’m his carer has taken its emotional toll on me. I have always suffered with depression and seeing my husband’s health get worse and just having to process everything has done my head in a bit.
In June I was prescribed Sertaline for anxiety and depression after hubby had been telling me for over a year that I needed to get some sort of help. It was about time too because I got a wake up call a few weeks later when I collapsed in our bedroom. I’ve not felt 100% right since.
I have had MRI and EEG, which were both normal, and I had to wait until October to see a neurologist. He just told me it was all stress related. He also told me that my migraines were because of the extra stress I was going through. He prescribed Pregabalin for them and they have helped a bit. I’m certainly not getting my migraines as frequently!
I don’t want any of you to read this and feel sorry for me. Yes, I had little choice at first in becoming my husband’s carer, but I have chosen to stay his carer.
What frustrates you most?Easy – the uncertainty of it all. What will it be today? This afternoon? 10 minutes from now? We can never plan anything or live any kind of normal life anymore.
Samantha?There are a lot of things that frustrate me about what is happening with my husband. I’m very frustrated with how he’s been treated by the medical professionals. There has been no consistency with his care and know one has given him any real answers.
Any last words for my blog followers?Yes, if any of the answers here have offended anyone …. Tough! Lol. Seriously though, everyone has to learn to deal with things in their own way. We use honesty and humour because if we didn’t laugh, we’d cry.
Samantha?Remember to take care of each other and watch something that makes you laugh, I recommend Family Guy.